Cancer Health Fall 2020

A SMART+STRONG PUBLICATION CANCERHEALTH.COM SUMMER FALL 2020 $3.99

THE FITNESS ADVANTAGE A Breast Cancer Journey Managing Melanoma Restoring Sexual Relationships A Lymphoma Diary Yoga Therapy Wellness Resources

COVID-19: Changing the Face of Cancer Care Donna Hopkins

THE PROBLEM WITH CANCER RESEARCH THAT FOLLOWS CONVENTIONAL WISDOM IS THAT THERE’S NOTHING CONVENTIONAL ABOUT CANCER. At the Damon Runyon Cancer Research Foundation, our research focus is singular: High-risk, high-reward.

We believe that only by pursuing and investing in the most audacious and ambitious ideas, and the young scientists who have those ideas, will we achieve real and lasting victory over humankind’s deadliest enemy.

To learn more, visit damonrunyon.org

Sakiko Suzuki, MD Physician-Scientist Inflammation and Cell Death

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CONTENTS

E xclusively on

Since she was a little girl, Donna Hopkins has loved sports.

Cancer Health.com Cancer Health Stories Read the firstperson stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories

Basics

Whether you’re newly diagnosed or a long-term survivor, check out our fact sheets on cancer treatment, managing side effects and more. cancerhealth.com/basics

Treatment News

HOPKINS, COVER AND THIS PAGE: COURTESY OF DONNA HOPKINS/JEFFREY FOWLER, SHARPER IMAGERY AND OSSUR; (HEART SPEECH BUBBLE, IV TREATMENT, TYPEWRITER) ISTOCK

Learn about the latest treatment advances and conference news. cancerhealth.com/treatment

Blogs

Check out our selection of blogs by people living with cancer, advocates, experts and the Cancer Health editors. cancerhealth.com/blogs

Cancer Health Digital Go to cancerhealth.com to view the current issue and the entire Smart + Strong digital library.

12 MAKING STRIDES Two-time breast cancer survivor Donna Hopkins lost a lower leg to amputation, but this athlete keeps moving. BY KATE FERGUSON 18 COVID-19: CHANGING THE FACE OF CANCER CARE Many people are caught between fears of contracting the new virus and missing lifesaving cancer treatment.

BY LIZ HIGHLEYMAN 2 From the Editor States of Wellness 4 Care & Treatment Immunotherapy innovations | lung cancer prevention | a toll on the heart | triple-negative breast cancer survival | FDA approvals 6 News Yoga therapy | melanoma in Black people | Is alcohol healthy? | Video: Pandemic grit | Isolation’s end?

8 Basics Managing Melanoma 10 Voices Glenn Sabin’s nearly Mediterranean diet | Jill Cadman no longer keeps a secret from her son.

22 Diary Avie Barron won’t let non-Hodgkin lymphoma keep her from jiujitsu.

27 Your Team A little sexual medicine can go far.

28 How To Keep your hair—and care for it.

29 Resources Wellness websites to use at home 30 Good Stuff Chemo care baskets, hats and more 32 Life With Cancer Julie Mizraji’s birthday race 33 Reader Survey What’s your wellness self-care?

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FROM THE EDITOR

Cancer Health TM

SO MUCH OF CANCER IS ABOUT waiting—anxiously. But in a world that can make you feel powerless, taking steps toward wellness can help you take charge.

For Donna Hopkins (“Making Strides,” page 12), our cover subject, fitness has always been her edge, from the time her father nailed a basketball hoop onto a shed in the family’s backyard. Being fit has sustained her through two bouts of breast cancer and the partial loss of a leg. In “Fitness and Breast Cancer” (page 17), discover the latest science about exercise, body fat and recurrence.

Quitting smoking, another act of self-care, at any point before a lung cancer diagnosis improves survival (Care & Treatment, page 4). In News (page 6), discover how yoga therapy helps people overcome side effects— and supports caregivers too.

Sometimes, it seems that the world is making regaining a sense of control ever harder. Certainly, the coronavirus pandemic has instilled fear of infection in everyone and delayed needed treatment for many. Yet in some ways, the changes may actually improve care. Fight fear with facts by reading “COVID-19: Changing the Face of Cancer Care” (page 18).

Everyone needs a little help on the journey toward wellness. Discover how sexual medicine can help both men and women restore sexual function and improve relationships (Your Team, page 27). Find out how to keep your hair and care for it after treatment (How To, page 28), and

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discover soothing products to help you feel better (Good Stuff, page 30).

Everyone’s path is unique. In “What I Eat” (page 10), Glenn Sabin describes how eating “with intent to heal” guides his fork. Jill Cadman (“The Secret,” page 11), finds telling the truth liberating. Avie Barron (“A Lymphoma Diary,” page 22) earned a blue belt in jiujitsu. Julie Mizraji (Life With Cancer, page 32) was devastated by her metastatic breast cancer diagnosis— until she decided to run a half-marathon for her birthday.

What are your wellness self-care tips? Let us know in the Reader Survey (page 33). Now more than ever, stay safe and be well.

SMART + STRONG PRESIDENT AND COO Ian E. Anderson EDITORIAL DIRECTOR Oriol R. Gutierrez Jr. EXECUTIVE EDITOR Bob Barnett CHIEF TECHNOLOGY OFFICER Christian Evans VICE PRESIDENT, INTEGRATED SALES Diane Anderson INTEGRATED ADVERTISING MANAGER Jonathan Gaskell INTEGRATED ADVERTISING COORDINATOR Ivy Peterson SALES OFFICE 212-938-2051 sales@cancerhealth.com BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com CDM PUBLISHING, LLC CHIEF EXECUTIVE OFFICER Jeremy Grayzel CONTROLLER Joel Kaplan Cancer Health (ISSN 2688-6200) Issue No. 11. Copyright © 2020 CDM Publishing, LLC. All rights reserved.

No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and Cancer Health™ are registered trademarks of CDM Publishing, LLC.

BOB BARNETT Editor-in-Chief bobb@cancerhealth.com Twitter: @BobCancerHealth

Cancer Health is BPA audited.

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States of Wellness

EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman DEPUTY EDITOR Trent Straube SENIOR EDITOR Kate Ferguson COPY CHIEF Joe Mejía ASSISTANT EDITOR Alicia Green ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Timothy Henrich, MD; Carl June, MD; Gaby Kressly; Yung S. Lie, PhD; Gilberto Lopes, MD; Peter Pitts; Hope Rugo, MD FEEDBACK Email: info@cancerhealth.com

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CARE & TREATMENT

BY LIZ HIGHLEYMAN

Triple-Negative Breast Cancer First-line treatment with Keytruda (pembrolizumab) plus chemotherapy reduced the risk of disease progression or death for women with advanced triplenegative breast cancer (TNBC), researchers reported at the American Society of Clinical Oncology Annual Meeting.

The Phase III KEYNOTE-355 trial compared Keytruda versus a placebo, both taken with chemotherapy, in more than 800 women with locally recurrent or metastatic TNBC, a type of breast cancer that can’t be treated with hormone therapy or HER2 inhibitors. Keytruda is a PD-1 checkpoint inhibitor that helps T cells fight cancer.

Keytruda plus chemotherapy reduced disease progression or death by 35% in people with at least 10% PD-L1 expression—a biomarker of response to checkpoint immunotherapy.

The median progression-free survival (PFS) time increased from 5.6 months in the placebo group to 9.7 months in the Keytruda group.

PFS increased to 7.6 months for Keytruda recipients with at least 1% PD-L1 expression, but this difference wasn’t statistically significant.

Keytruda plus chemotherapy led to “clinically meaningful improvement” in women with this hard-to-treat cancer, the researchers concluded.

CANCER’S TOLL ON THE HEART Chemotherapy for childhood cancer can lead to heart problems decades down the road, but researchers are exploring ways to reduce the risk.

Eric Chow, MD, MPH, of Fred Hutchinson Cancer Research Center in Seattle, and colleagues analyzed data from five randomized studies of children with cancer who were treated with the cardiotoxic drug doxorubicin with or without Zinecard (dexrazoxane), a chelating agent that protects the heart. After nearly 18 years since their cancer diagnosis, those who used Zinecard along with doxorubicin had better heart function and lower levels of biomarkers associated with heart damage.

Chow’s team also analyzed more than 500 participants in the longrunning Childhood Cancer Survivor Study. More than a quarter had evidence of undiagnosed high blood pressure or prediabetes, while 17% had abnormal cholesterol—all risk factors for cardiovascular disease.

What’s more, up to half of those who had been diagnosed with these conditions were not adequately treated.

In a new trial, the researchers will evaluate whether childhood cancer survivors can benefit from participating in a telehealth counseling session with Fred Hutch experts to develop a plan for managing their cardiovascular risk.

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Now Approved The Food and Drug Administration has been approving new cancer treatments at a rapid pace. Here are the latest arrivals: • Blenrep (belantamab mafodotin) for multiple myeloma • Inqovi (decitabine/ cedazuridine) for myelodysplastic syndrome • Monjuvi (tafasitamab) for diffuse large B-cell lymphoma • Mylotarg (gemtuzumab ozogamicin) for acute myeloid leukemia • Phesgo (pertuzumab/ trastuzumab/ hyaluronidase) for HER2-positive breast cancer • Qinlock (ripretinib) for advanced gastrointestinal stromal tumor • Tecartus (brexucabtagene autoleucel) CAR-T therapy for mantle cell lymphoma • Zepzelca (lurbinectedin) for small cell lung cancer

Innovations in Immunotherapy Promising data on two new types of immunotherapy were presented at the American Association for Cancer Research virtual annual meeting.

A Phase I study by Ben Creelan, MD, of Moffitt Cancer Center in Tampa, evaluated tumor-infiltrating lymphocytes (TILs)—immune cells with known cancer-fighting ability—in people with metastatic non-small-cell lung cancer. The treatment, known as lifileucel, was previously shown to help people with advanced melanoma, but lung cancer has not responded as well to immunotherapy.

Using a process known as autologous adoptive cell transfer, T cells with a natural ability to attack cancer were collected from patients’ tumor biopsy samples, multiplied in a lab and infused back into the same individual. Participants also received the checkpoint inhibitor Opdivo (nivolumab) and a cytokine that encourages T-cell proliferation.

Among the 12 evaluable treated patients, 25% saw their lung tumors shrink, including two people with ongoing complete remission for about a year so far. If an additional patient awaiting a follow-up scan also turns out to have a confirmed response, the overall response rate will rise to 33%.

Another Phase I study showed that combining a

personalized cancer vaccine with the checkpoint inhibitor Tecentriq (atezolizumab) led to tumor-specific immune responses in a majority of patients with various solid tumors, including non-small-cell lung cancer, melanoma, triple-negative breast cancer and bladder cancer.

To produce the vaccine, dubbed RO7198457, a patient’s tumor and blood samples are sequenced and up to 20 tumor-specific proteins known as neoantigens are identified. Messenger RNA from these proteins is then administered to the same individual to trigger an immune response against their cancer.

Blood tests from a subset of study participants found that nearly three quarters showed T-cell responses against the neoantigens in their customized vaccines. Among the 108 patients who had at least one tumor assessment, nine (8%) responded, including one colorectal cancer patient with a complete response. Another 49% had stable disease without further progression.

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LUNG CANCER PREVENTION Smoking cessation at any point before a lung cancer diagnosis improves overall survival.

Aline Fusco Fares, MD, of Princess Margaret Cancer Centre in Toronto, and colleagues analyzed more than 35,000 patients in the International Lung Cancer Consortium cohort. Nearly half were current smokers when diagnosed, about 30% were former smokers and about 20% had never smoked.

Those who quit more than five years before their lung cancer diagnosis showed a 20% improveFor more care and treatment news: cancerhealth.com/treatment

ment in overall survival, while those who quit two to five years prior had a 16% improvement.

But even those who quit less than two years prior had a 12% survival benefit compared with those who still smoked.

The take-home message, Fares says, is that “it’s never too late to quit smoking.”

Current or former heavy smokers are advised to undergo CT scan screening to detect cancer early, when it’s easier to treat, but only around 2% do so. New guidelines from the U.S. Preventive

Services Task Force would expand screening eligibility.

Currently, screening is recommended for people age 55 and older who have smoked the equivalent of at least a pack a day for 30 years and who either still smoke or quit within the past 15 years. The proposed guidelines lower the screening age to 50 and the pack-year threshold to 20. These changes could nearly double the number of people who meet the screening criteria and would include more women and Black people.

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NEWS

BY BOB BARNETT

YOGA FOR CANCER In your mind’s eye, when you imagine yoga, do you see a fit Smitha Mallaiah, MS person perfecting a difficult pose? That can be a problem.

“When people are going through a life-threatening illness like cancer, they ask, ‘Why would I do anything like yoga now?’” says Smitha Mallaiah, MS, a yoga therapist at MD Anderson Cancer Center in Houston. She often responds, “If you can breathe, you can do yoga.” Depending on the cancer and the individual, she employs different clinical protocols: • Breast cancer. After surgery and radiation, many women experience painful and limiting lymphedema—swelling from the removal of lymph nodes. “We do stretching and strengthening exercises that keep the lymph moving, combined with deep breathing,” explains Mallaiah. “We avoid practices such as a plank or downward dog that put pressure on lymph nodes.” Yoga for women with breast cancer reduces pain while improving range of motion, physical functioning and a sense of wellness.

• Head and neck cancer. Treatment, including surgery and radiation, can lead to rapid weight loss and severe difficulties in swallowing, which can lead to tube feeding and further decline.

Studies found that yoga therapy after treatment didn’t work well, but a prehab program, including exercises for the head and neck and to aid swallowing, “was like day and night—60% to 70% improved,” she says. Compared to controls, those doing yoga pretreatment were less likely to get a feeding tube and more able to maintain weight.

• Uterine and cervical cancers can lead to fatigue, bleeding, pelvic scarring, vaginal dryness, long-term pain and urinary and fecal incontinence. Yoga can help before and after treatment.

“Certain poses benefit the pelvic floor area, and breathing practices help with pain and fatigue. It can be extremely beneficial.”

Yoga also benefits the mind and spirit. “When someone is going through a life-threatening illness, most of their world is fear,” Mallaiah says. “Yoga calms the nervous system, helping with anxiety, depression and sleep.” Learning a specific practice for when you feel tired, for example, can help you feel empowered.

Mallaiah works with caregivers too. “Patients often feel dependent on caregivers, so when they do a yoga pose, I get them to support each other equally and become present to each other’s breath.

They often tell me, ‘This is the only time we have been able to open up to each other in such a positive atmosphere.’”

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Alcohol Falls What’s the healthiest amount of alcohol to consume? Zero, according to the Diet and Physical Fitness Guidelines issued by the American Cancer Society (ACS) in June, which advises, “It is best not to drink alcohol.” Any amount of alcohol increases the risk of cancers of the throat, voice box, esophagus, liver, colon and rectum, breast and, probably, stomach, according to ACS. “Alcohol use accounts for about 6% of all cancers and 4% of all cancer deaths in the United States.”

For those who do drink, the ACS advises a limit of one drink a day for women, two for men. That’s consistent with the current federal Dietary Guidelines. But even that may be changing, in part because earlier studies showing a cardiovascular benefit from moderate alcohol consumption have been called into question. According to The New York Times, the committee’s advice for the upcoming 2020–2025 Dietary Guidelines will be to recommend a one-drinka-day limit for both men and women.

(MALLAIAH): COURTESY OF MD ANDERSON CANCER CENTER; (ALL OTHER IMAGES) ISTOCK

BLACK SKIN Racial bias in the way medicine is taught means that doctors often miss melanoma and other skin disorders in Black people, writes University of Rochester dermatology professor Art Papier, MD, on the website STAT. “The skin is considered a window into health,” he writes. “But clinicians who haven’t been properly trained often fail to see conditions in patients with Black skin.”

In white skin, Papier writes, skin inflammation appears red or pink. In skin of color, it’s more likely to appear brown or violet. He describes doctors missing signs of lupus and potentially deadly drug reactions because they are only trained to identify problems in white skin.

For melanoma, a missed diagnosis can have fatal consequences. According to the Melanoma Research Alliance, studies show that Black people are four times more likely to be diagnosed with advancedstage melanoma and 1.5 times more likely to die of melanoma than white people.

The most common form of melanoma in Black people, acral lentiginous melanoma (ALM)—the disease that killed reggae icon Bob Marley— doesn’t even appear on exposed skin. It forms on the palms, soles of the feet or under fingernails or toenails. The warning sign for ALM is a patch of discolored skin that grows over time.

Tackling systemic racism in medicine is complex, but one small step dermatologists can take is to educate themselves on how to treat skin of color and educate their patients as well, writes Papier. “Early on in my career, I recognized that showing reference images to patients that represent not only their condition but also their skin type can transform the conversation.” Racism in medicine, he concludes, “is not simply about poor access, inequitable care or hiring bias—it is also at the core of how we teach and practice medicine with people of color.”

ISOLATION’S END

When cancer survivor and author Suleika Jaouad (suleikajaouad.com) underwent a stem cell transplant several years ago, her social isolation was extreme. She found connection by sharing one small creative act a day for 100 days with friends and family.

Now she’s created “The Isolation Journals.” Sign up to get a weekly prompt to write about, for example, “the last time you looked at something and noticed a change within—studying a painting, an animal, a flower” and have it shared with others.

—Caroline Tien

Coping With COVID-19 Video How has the pandemic affected people with cancer? Watch Cancer Health bloggers Megan-Claire Chase, Robin McGee and Jeff Neurman recount their extraordinary stories with editor-in-chief Bob Barnett in this video of the Zoom and Facebook Live event. cancerhealth.com/athome Get more cancer news: cancerhealth.com/news

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BASICS

BY LIZ HIGHLEYMAN

Managing Melanoma MELANOMA IS A CANCER that originates in pigmentproducing cells known as melanocytes. It usually starts in the skin, but the mouth, eyes or internal organs can also be affected. Although less common than other types of skin cancer, melanoma is more likely to spread—a process known as metastasis—and it is much more likely to be deadly.

Melanoma rates have been rising in recent decades. Over 100,000 people will develop melanoma, and nearly 7,000 will die from it this year, according to the American Cancer Society.

White people are most likely to develop melanoma, but it can also occur in people with dark skin. Black people may develp a form called acral lentiginous melanoma on the palms, soles of the feet or under fingernails or toenails.

The main risk factor for melanoma is exposure to ultraviolet radiation from the sun or tanning beds. The best way to protect yourself is to avoid the sun during the middle of the day, use a broad-spectrum sunscreen and cover your skin.

The most common sign of melanoma is an unusual dark spot on the skin—but most moles are not cancerous. Other warning signs include redness or swelling around a mole, oozing or bleeding moles and sores that don’t heal. Check your skin regularly, and report suspicious changes to your doctor.

MELANOMA TREATMENT The sooner melanoma is detected, the easier it is to treat. Small, localized cancer can often be surgically removed. Nearby lymph nodes may also be removed and tested to determine whether the cancer has spread.

Radiation therapy may be used to kill malignant cells that remain after surgery or to shrink cancer that cannot be removed.

Metastatic melanoma that has spread elsewhere is more difficult to treat. Chemotherapy does not work very well against melanoma, and it is usually not the first line of treatment.

Targeted therapies work

Be on the lookout for moles with the following characteristics: • Asymmetrical • Borders are irregular or ragged • Color is inconsistent, or mole is more than one color • Diameter is more than a quarter of an inch • Evolving, or changing in size, shape or appearance.

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against cancer with specific characteristics, often blocking proteins that play a role in cell growth. About half of all melanomas have a BRAF gene mutation, which makes them susceptible to BRAF inhibitors. Other drugs target the MEK protein; BRAF and MEK inhibitors often work better in combination.

The newest type of treatment helps the immune system fight cancer. Because melanoma has more mutations than other cancers, it is easier for the immune system to recognize, and it responds better to immunotherapy. Melanoma was the first approved indication for checkpoint inhibitors, which restore T-cell activity against cancer.

Treatment for melanoma has evolved rapidly in recent years, and survival rates have improved dramatically. What’s more, new treatment approaches are being developed. Ask your doctor whether a clinical trial might be a good option for you. ■ Learn more cancer basics: cancerhealth.com/basics

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The most aggressive type of skin cancer may respond to immunotherapy.

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VOICES

BY GLENN SABIN

What I Eat

LIFESTYLE CHANGES ARE A powerful way to help prevent, manage and reduce the recurrence of disease—and to improve your quality of life. But nutrition can be confusing. That’s why I believe that anyone living with cancer should seek guidance from a well-trained expert in cancer nutrition science and clinical care.

I am not that expert. But I can share my personal approach to food-based nutrition as a 29-year cancer “thriver.”

Within the first couple of years after being diagnosed with chronic lymphocytic leukemia (CLL), I radically altered my diet. I changed from an avid carnivore, ingesting copious amounts of meat products and processed foods sprinkled with occasional veggies, to what now might be best described as an adherent of the Mediterranean diet—with a few caveats.

I eat a ton of veggies—a rainbow of colors, heavy on the cruciferous family, especially broccoli, Brussels sprouts, cabbage, bok choy and cauliflower. Whenever I can, I buy organic fruits and vegetables.

For grains, it’s brown rice or sprouted grains. I enjoy tofu, tempeh, beans, legumes, nuts, seeds, fermented foods, including sauerkraut, and lots of spices.

The oils in my kitchen are extra

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virgin cold-pressed olive oil and organic coconut oil.

The only animal protein I consume is fish rich in omega-3 fatty acids. I mostly stick with cold-water swimmers like salmon, halibut and sardines, although as a lifelong Marylander, I readily admit that I gorge on our famous, yet not so clean, Chesapeake Bay blue crabs at least a half dozen times each summer.

To wash all this down, I drink filtered water only—lots of it.

I have almost completely eliminated sugar from my diet, with the exception of an occasional indulgence in 85% dark chocolate.

My go-to sweetener is medjool dates, and I sometimes use agave or stevia. When dining out, I always ask if dishes can be prepared without sugar; most can be. I do not eat processed foods or anything high glycemic (white or whole wheat bread, white rice, white potato) that quickly converts to blood sugar and spikes insulin. The only dairy I consume—a couple of times each year, typically with my kids while we watch a football game— is pizza: real cheese, white flour and all.

This is the way I have eaten for a quarter century. I have been largely successful with this

food routine—not Glenn Sabin leans on a diet per se, good, clean simply a part of food and my everyday drink. lifestyle that supports my body—and my mind.

I am in remission.

My hematologist believed that diet would have no impact on the course of my CLL. But he certainly did not dissuade me from being the healthiest patient possible.

And neither should your hematologist. A hematologist’s goal is to effectively treat or manage disease—the underlying malignancy. In my case that was CLL. Your goal should be to create an internal terrain that is inhospitable for cancer. There is absolutely no downside to becoming your healthiest self. If you are living with disease in the here and now, start feeding your body now with intent to heal. ■ Glenn Sabin (GlennSabin.com) is the author of the book n of 1.

For more first-person essays: cancerhealth.com/stories

COURTESY OF GLENN SABIN/JEREMY MEEK

Glenn Sabin, diagnosed with chronic lymphocytic leukemia 29 years ago, lives in Maryland with his wife, Linda, and sons, Miles and Jared.

BY JILL CADMAN

VOICES

The Secret

COURTESY OF JILL CADMAN/LAURA FARR

Jill Cadman is a former patient advocate and educator living with HIV and Stage IV colon cancer.

IN 2017, WHEN I WAS 54 and my son was nearly 17, I found out I had Stage IV colon cancer.

My husband and I were devastated by the diagnosis, but we did not hide it from our son.

In fact, we told him the same day we found out.

The truth is, we already had been keeping a secret from him: I am HIV positive. I was diagnosed in 1992. At the time, I almost didn’t get tested, since I am a straight white woman.

That was just my own prejudice.

There were no good treatments in those days; HIV was more or less a death sentence.

Stigma toward HIV-positive people was rampant. I experienced some, but it was far worse for others. I switched careers to work in the HIV field and found comfort in the HIV and LGBT communities. I was fairly open about my HIV status with family, friends and work colleagues.

By 2000, though, we had moved to a suburb in New Jersey and had a beautiful, healthy baby, and I no longer felt I could tell people about my HIV status.

I was afraid that our son would face discrimination, that parents would not want their children associating with him.

It was different when the cancer diagnosis came. As with HIV, I was afraid my time was up. But I wasn’t afraid people would judge me for contracting For more first-person essays: cancerhealth.com/stories

colon cancer.

I know stigma about cancer exists, and, although I did not experience it, I can relate. Having certain kinds of cancer may cause feelings that people will judge you—just as I was afraid people would think that contracting HIV was my fault. Instead of counting on support and sympathy, you may fear or experience stigmatization and moralizing. It is deeply hurtful if this happens, especially if you are judged by people close to you.

In 2019, a journalist I know asked to interview me for this magazine’s sister publication, POZ, about living with HIV and cancer. I agreed, knowing this would force me to come out.

The day the article hit the internet, I finally told my son.

He didn’t understand why I had waited so long. It was really NBD (no big deal) to him.

His generation does not see HIV as a death sentence or as stigmatizing to me or to him. I wondered why I had been so fearful of telling people in our local community.

While you cannot control how

For Jill others react, Cadman, looking at it now, I truth was think being open liberating. is a better option than trying to keep a secret.

Choose to be kind to yourself.

If you are angry at anything you have done, forgive yourself. Find people who will support you.

This will give you more strength to face your fears and any critics.

After I told my son, I felt liberated. I may not ever be the openly HIV-positive advocate fighting stigma and ignorance I once thought I should be. But I’m no longer keeping secrets or living in fear.

I did that for far too long. ■

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BY KATE FERGUSON

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COURTESY OF DONNA HOPKINS/ JEFFREY FOWLER, SHARPER IMAGERY AND OSSUR

Two-time breast cancer survivor Donna Hopkins lost a lower leg to amputation, but this die-hard athlete and sports fan just won’t stop moving.

HEN DONNA HOPKINS WAS A little girl, her father nailed a basketball hoop onto a shed in the family’s backyard in Oak Hill, West Virginia. Soon, the self-described tomboy was sinking baskets with her siblings—four brothers and five sisters. “Then we played flag football, and that’s where I think I got my itch for sports,” she says. “Sometimes I think God instilled that in me because He knew I was going to need to be strong and healthy later on in my life.”

Hopkins’s athletic ability, teamed with a fierce competitive spirit, inevitably put her on a path to achievement in sports. During her junior year in high school, she played basketball and joined an Amateur Athletic Union track team. She went to college on a basketball scholarship.

Once there, she received another scholarship, this time in track. Eventually, she joined her brother, a Marine, on his league’s intramural team and later played on the women’s traveling team. “I wasn’t military,” Hopkins explains. “But I ended up being able to play just because of the circumstances. That just fueled my passion for sports even more.”

In college, Hopkins majored in radio and TV communication. After graduation, she moved to the Washington, DC, metropolitan area where James Brown, now a CBS Sports reporter, became her mentor. Her TV sportscasting break came when Darrell Green, a former Hall of Fame cornerback for the Washington Football Team (formerly the Washington Redskins), spoke to a teammate about her. She became a cohost and reporter for the show and began working with Tony McGee, another former player on the team. Like dots on a linear path, Hopkins’s future seemed neatly mapped out.

“At 10, I knew what I For Donna Hopkins, wanted to do,” she says. staying fit was key to Then one day, while sitovercoming breast cancer. ting at work, Hopkins’s life

veered off course. She touched the top of her chest and felt a lump. “The first thing I said to myself was, ‘Please don’t let it be the big C,’” she recalls.

“When I got home, I didn’t discuss it with anybody. I immediately called my doctor the next day, and she told me to come in for a test.” At the time, Hopkins was 36 years old.

Hopkins’s X-rays showed nothing. Initially, health providers thought the mass was linked to her menstrual cycle, so they sent her to a breast specialist for more testing. After reviewing her mammogram and ultrasound, the specialist ordered more tests.

While waiting for her test results, Hopkins ran in the Race for the Cure, a breast cancer fundraising event in which she’d participated for almost 15 years. “That day, I ran the best race of all because I was running for myself,” she says. “I already knew that I had breast cancer, but I just hadn’t gotten the official results back.”

A SMALL TUMOR Hopkins’s cancer was a high-grade ductal carcinoma in situ with a single focus of microinvasion in the right breast. This meant the Stage I cancer was located in one area of the breast ducts; the grading indicated there was a higher risk the cancer would become invasive and possibly recur. A test showed that her cancerous breast tissue was negative for estrogen and progesterone and borderline for HER2 receptors, which ruled out hormone therapy and certain targeted therapies as treatment options.

Hopkins chose to have a lumpectomy, surgery that removes only the tumor and a small amount of surrounding normal breast tissue. Then her whole breast was irradiated.

She continued her workouts at the gym while undergoing radiation. “I got back up to speed and moved on with my life,” she says. That year, her follow-up mammograms were clear.

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But two years later, in 1999, her screening detected that the cancer had returned. “I had been losing weight, and I thought it was just because I was working out hard,” she says. This time, the cancer was closer to the chest wall in the same breast.

“My doctor had said that if the cancer came back in the same breast of course I would lose it,” Hopkins says. “And I was all right with having a mastectomy.”

With the support of a few friends, she decided to have breast reconstruction surgery at the same time. “I had to train myself all over again just to raise my arm up,” she says. “My chest was tight as a drum.”

But she wanted to run in the Race for the Cure again. The June event was scheduled right after her release from the hospital.

Hopkins begged her doctor to allow her to race. “Just like the first time, I knew that I needed to do it again.” After an initial no, her surgeon relented, on the condition that she walk, not run, and stop if she began to feel hot.

“I had in drainage tubes and needed to constantly empty them,” Hopkins says. “People might say, ‘Good grief, that’s crazy,’ but for me, it was healing and a testimony to others that going through cancer doesn’t have to destroy you if you don’t allow it to.”

Hopkins walked in the race the day after she came out of surgery. She believes that was only possible because she was physically fit when she went in. Indeed, there is compelling evidence that physical activity improves quality of life in women with breast cancer and may protect against recurrence (see “Fitness and Breast Cancer,” page 17).

She has been cancer-free for more than 20 years.

From top: Donna Hopkins prepares for a regatta; with friends at a Pink Ribbon Throwdown

GIVING BACK After recovery, Hopkins worked with the nonprofit Breast Cancer Care Foundation for five years. In 2005, she launched her own nonprofit, Hopkins Breast Cancer Inc., to give people with breast cancer a financial “helping hand” so they could meet everyday living expenses.

Then, in 2010, Hopkins faced another medical challenge. Complications from routine surgery to remove uterine fibroids almost killed her when the blood thinner she was given caused clots instead of preventing them.

Deathly sick, Hopkins was transferred to a trauma hospital. By then, her toes looked “like a piece of black paper or a chunk of coal,” she says.

Hopkins’s mom arrived from West Virginia to make decisions on her daughter’s behalf. “She told the doctors that I was very active, so they should amputate my leg below the knee,” Hopkins says. “This gave me an opportunity to be able to do everything I did before. They said that if I wasn’t healthy, then I definitely wouldn’t have made it because I lost almost 50 pounds in the hospital.”

When she was released, Hopkins—now outfitted with a prosthetic leg—went to Walter Reed National Military Medical Center to work with a physical therapist, who suggested she consider taking up rowing. At first, Hopkins was reluctant.

“I told her that I didn’t even know how to swim, so she said she’d teach me,” she says. “That’s when the competitor in me came out, and I told her I’d try it out.” She joined

14 CancerHealth FALL 2020 cancerhealth.com

For more survivor profiles: cancerhealth.com/magazines

COURTESY OF DONNA HOPKINS/ JEFFREY FOWLER, SHARPER IMAGERY AND OSSUR

CANCER DOES NOT HAVE TO DESTROY YOU.

COURTESY OF DANA-FARBER CANCER INSTITUTE

the MedStar adaptive rowing program at National Rehabilitation Hospital.

“I rowed professionally for four years trying to make it to the Paralympics,” she says.

She played wheelchair basketball too.

Then, Hopkins returned to track and field. Once again, she tried out for the Paralympics, missing the 100-meter trials by .33 seconds. She recounts her experiences in her 2018 memoir, Getting to the Other Side of Victory.

“When you go through cancer and you lose a breast, a lot of people might think, Oh, man, part of my femininity is gone,” she says. “But to me, choosing to lose a breast versus losing your life is not a hard decision. The same thing applies to losing a leg.”

Now 59, Hopkins firmly believes that she’s a much better person after emerging on the other side of everything she experienced.

“No one likes going through cancer—who does?

And, no, I don’t like my leg being gone because I’m an athlete,” she says. “But I am a much better person all the way around because I see things in a different way, which allows me not to miss out on living life to its fullest.”

Then she adds, “Sometimes we cheat ourselves out of life because we cannot get past what we went through. I’ve never wanted to get stuck there. Keep moving forward instead of backward.” ■

FITNESS AND BREAST CANCER

Jennifer Ligibel, MD, is a medical oncologist specializing in breast cancer at the Dana-Farber Cancer Institute in Boston.

Is fitness advice for people with cancer changing?

Fifteen years ago, when I started caring for patients with cancer, we were mostly worried about cachexia— involuntary weight loss. Recommendations included getting plenty of rest and even eating ice cream!

Cachexia is still a big problem for many cancers, including breast, but we now know that weight gain, especially increased body fat and loss of muscle, are bigger problems.

Is exercise a good idea if you have a breast cancer diagnosis?

It’s important before, during and after treatment. Physical activity prevents deconditioning and weight gain, and women feel better; they have less anxiety and depression. It’s also important for cardiovascular health.

What about its effect on breast cancer itself?

In animal studies, when we put rats and mice on an exercise program, tumors grow more slowly. We know less about direct effects on breast cancer in humans. In one small human study we’ve done in women assigned to an exercise program, there was a direct genetic effect on tumor tissue. Something changed within the cancer that could be related to the cancer’s aggressiveness.

Does this translate to better outcomes or less recurrence?

In population studies, people who exercise more are less likely to develop breast and other cancers, and women who exercise after a breast cancer diagnosis are less likely to have a recurrence. But we don’t know exercise is actually responsible.

So we are studying a combined diet and exercise program in women who are obese or overweight when they are diagnosed with breast cancer to

see if helping them change these factors will affect the risk of the cancer coming back, and of dying from breast cancer.

How are you studying this?

3,136 women will be randomized to usual breast cancer care or to a two-year telephone coaching program for weight loss and fitness.

They’ll aim for 150 minutes of mostly aerobic activity a week and then try to push that to 200 during the weight maintenance phase. They’ll get Fitbit activity trackers and wireless scales to monitor weight. We expect results in 2024.

What fitness recommendations do you have now?

Current guidelines now recommend that all patients diagnosed with cancer try to become more physically active. The goal is 150 minutes of aerobic activity plus two strength training sessions a week. But even a lower level of activity will mean less weight gain, feeling better and less fatigue. The best treatment for fatigue is actually exercise.

How should people start if they haven’t been particularly active?

Start really slow, perhaps 10 minutes three times a week. Try to walk around the block. When you can do that without shortness of breath, do it twice. Even if you were really active before, don’t try to go back to that level right away. It can help to work with a trainer—ask your care team.

Have you seen exercise benefit women with breast cancer?

Many say how becoming physically active helps them get back to feeling really good. So many pieces of cancer are out of their control, but this is something they can do for themselves.

—Bob Barnett

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CancerHealth 17

The pandemic raises new concerns, but it may also lead to long-lasting improvements.

BY LIZ HIGHLEYMAN

THE COVID-19 PANDEMIC PRESENTS new challenges for people living with cancer. Many are worried about whether they are at greater risk of getting the new coronavirus, developing severe COVID-19 or dying from it.

Efforts to protect patients and the diversion of medical staff and resources have resulted in the deferral of cancer care. Many healthy individuals have skipped recommended screenings, people with newly diagnosed cancer have postponed lifesaving treatment and those already undergoing treatment have delayed their scans and blood tests. The pandemic has also led to a slowdown in clinical trials of new therapies. “Patients undergoing cancer treatment have had to make difficult choices to interrupt or modify their cancer treatment to decrease their risk of COVID-19 but thereby increase their risk of cancer progression or to continue their cancer treatment, risking a greater likelihood of COVID-19 disease or complications,� says Richard Schilsky, MD, executive vice president and chief medical officer of the American Society of Clinical Oncology (ASCO).

COURTESY OF MEGAN-CLAIRE CHASE

But at the same time, the pandemic has brought about greater flexibility and innovations in care and research that could offer long-lasting benefits for cancer patients and survivors.

CANCER AND COVID-19 OUTCOMES Early in the pandemic, things seemed simple. Reports from China, where the new disease emerged in late 2019, showed that people with immune suppression had higher rates of COVID-19 and worse outcomes, and this included people with cancer. What’s more, many people with cancer are older and have coexisting health conditions, both of which increase vulnerability to severe COVID-19.

The picture became less clear as researchers worldwide reported widely varying rates of complications and death among cancer patients with COVID-19. But now, efforts to pool data are providing more clarity. These include the COVID-19 and Cancer Consortium (CCC19), the TERAVOLT registry of people with lung cancer and the ASCO Survey on COVID-19 in Oncology Registry. The National Cancer Institute (NCI) recently started the NCI COVID-19 in Cancer Patients Study, or NCCAPS, which aims to collect medical information from 2,000 people with cancer and COVID-19 who will be followed for up to two years.

Some studies have shown that people with cancer are more likely to contract the coronavirus. Such research is complicated by the fact that cancer patients spend more time in medical settings where they could be exposed to the new virus, although they are also more likely to take precautions in their daily lives.

The impact of cancer on COVID-19 outcomes is more definitive. Studies throughout the world have found that people living with cancer are at greater risk for severe COVID-19 and death. Still, the effect of cancer “pales in comparison” with the added risk associated with other conditions such as cardiovascular disease or diabetes, according to Leora Horwitz, MD, of New York University Langone Health. But risk factors add up: People with cancer who are older, are Black or Latino or have other health conditions are likely to fare worse.

Reports from some early COVID-19 epicenters, where medical capacity was stretched to the breaking point, showed that people with cancer had very high mortality rates. For example, at Montefiore Health System in the Bronx, 28% of COVID-19 patients with cancer died— two to three times the rate of people without cancer.

My anxiety has gone sky-high during COVID-19, but it’s OK to not be OK. The shutdown means a loss of time, and we’re never going to get it back. As cancer patients, we’ve already lost so much time.* —Megan-Claire Chase (Warrior Megsie), young adult breast cancer survivor More recent multicenter studies, however, have seen lower rates of COVID-19 complications and deaths as clinicians have gained a better understanding of the new disease and how to treat it.

A CCC19 analysis of more than 2,700 cancer patients with COVID-19, presented at the American Association for Cancer Research COVID-19 and Cancer Virtual Meeting in July, showed that 60% were hospitalized, 16% were admitted to an intensive care unit, 45% needed oxygen, 12% were put on ventilators and 16% died.

But people with cancer are not all alike. Studies have consistently shown that people with lung cancer or blood cancers, such as leukemia or lymphoma, have worse outcomes. While the overall mortality rate for people with cancer in the CCC19 analysis was 16%, this rose to 19% for those with colorectal cancer, 22% for those with lymphoma and 26% for those with lung cancer. On the other hand, people with breast cancer, gynecological cancers or prostate cancer do not appear to be at greater risk.

People with active cancer, especially those with metastatic disease, are more prone to severe COVID-19 and death. An earlier CCC19 analysis found that mortality rates were 25% for people with progressive disease, 14% for those whose cancer was stable or responding to treatment and 9% for those who were in remission or had no remaining evidence of disease. But to date, there has been little research on coronavirus outcomes among survivors with a past history of cancer, people who have finished

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CancerHealth 19

overall mortality,” treatment and those who are says Otis Brawley, in remission.

MD, of Johns HopThe type of cancer treatkins University in Balment also plays a role. Many timore. “Failure to receive chemotherapy drugs kill imtreatment is going to account mune system white blood for far more deaths—and cells, leaving people less able this could have an impact in to fight off infections. While three months.” several studies have shown During the worst outthat people currently underbreaks of COVID-19—as going chemo are at greater occurred in the Northeast in risk for COVID-19 complithe spring and are still cropcations, others haven’t seen ping up across the counsuch a link. try—personal protective The impact of immuno—Robin McGee, equipment and other retherapy is less clear. Part of patient advocate and sources are in short supply, the damage to the lungs clinical psychologist living and doctors and nurses are and other organs in people with colorectal cancer diverted from their regular with advanced COVID-19 work to focus on patients is caused by the coronavirus itself, but some severe complications are due to an overactive with COVID-19. Experts have advised people in hard-hit immune response known as a cytokine storm. Immune areas to stay home and in particular to steer clear of health checkpoint inhibitors that boost T-cell activity could care facilities to avoid exposure to the coronavirus.

This has had a dramatic impact on cancer care. During potentially help the body fight the coronavirus—or they could make matters worse. Studies to date have yielded the spring, the number of people getting screening tests such as mammograms declined by around 90%. An analysis conflicting results.

As research continues to sort things out, experts say by the national laboratory testing company Quest Diagconcerns about COVID-19 should not be a reason to stop nostics saw a steep 46% drop in the diagnosis of six comcancer treatment, as the risk of disease progression is likely mon cancer types during March and April.

A survey by the American Cancer Society in May a bigger threat.

The latest CCC19 analysis—the largest to date—found found that 62% of respondents said COVID-19 had that cancer treatment, including cytotoxic chemotherapy, affected their cancer care in some way, 37% reported delays targeted therapy, immunotherapy, hormone therapy, radia- and nearly a quarter feared losing their health insurance tion and surgery, did not significantly increase the risk of due to the economic fallout of the pandemic. For patients who do receive care at a hospital or infusion center, redeath for cancer patients with the coronavirus.

“This indicates that cancer care can continue for these strictions on visitors can mean facing the ordeal alone.

In a recent editorial in Science magazine, NCI director patients,” says Brian Rini, MD, of Vanderbilt-Ingram Norman Sharpless, MD, estimated that reduced screening Cancer Center in Nashville. due to COVID-19 and the resulting delays in diagnosis and treatment could lead to nearly 10,000 additional IMPACT ON CANCER CARE The COVID-19 crisis has affected all areas of cancer care, deaths from breast cancer and colorectal cancer over the including screening, diagnosis, treatment, follow-up next decade.

“Cancers being missed now will still come to light monitoring and clinical trials. While preventive screenings, nonurgent surgery, certain types of medication and eventually but at a later stage...and with worse prognoses,” routine checkups can often be safely modified or delayed, he wrote. “Ignoring life-threatening non–COVID-19 conditions such as cancer for too long may turn one public they can’t be put off forever.

“A screening delay of three months is not likely to affect health crisis into many others.”

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COURTESY OF ROBIN MCGEE

Part of the grief of COVID-19 for people with cancer is that we can’t do the things on our bucket list. We worry we won’t be able to see our loved ones, maybe for the last time. The pleasures we use to cope are no longer available.*

COURTESY OF JEFF NEURMAN

INNOVATIONS IN CARE Clinicians and patients are finding new and more flexible ways to deliver cancer care in the wake of the pandemic.

Sometimes treatments can be administered in a different order or on a modified schedule, such as starting medications while awaiting delayed surgery or receiving radiation or infusions less often. Oral medications can sometimes be substituted for IV chemotherapy. Some doctors advise using therapies that cause less immune suppression or are less likely to lead to side effects that could require hospitalization. People with low-risk cancer may opt for active surveillance rather than immediate treatment. And monitoring scans may be done less frequently.

Most cancer centers have shifted some of their on-site care to telemedicine and home care. Consultations about a diagnosis or side effects, for example, may be done via video chat; this can enable loved ones and caregivers to participate. Virtual meetings can also be a good option for support groups and mental health counseling. Some providers have given patients devices to monitor their vital signs and conduct other tests at home. In certain cases, IV chemotherapy may be administered by a nurse at home, but ASCO cautions that home infusions generally are not a safe alternative to outpatient treatment.

Recognizing its importance during the crisis, Medicare has expanded its coverage of telehealth and is considering making the change permanent. But the digital divide in familiarity with and access to technology could limit some people’s ability to benefit from these innovations, including older people and those with lower incomes.

Finding ways to continue clinical trials is another urgent priority. “Trial interruptions are devastating news for thousands of patients,” says ASCO president Howard Burris, MD, of Sarah Cannon Cancer Center in Nashville.

“In many cases, clinical trials are the best, or the only, appropriate option for care.”

To this end, the Food and Drug Administration, the NCI, ASCO and others are working with trial investigators and drug company sponsors to increase flexibility in how studies are designed and carried out.

For example, informed consent may now be provided remotely rather than in person. Participants are being asked to make fewer study visits, and scans and blood work can be done closer to home. “[Patients] don’t have to drive an hour for a CAT scan when there’s a machine 10 For news about cancer and the coronavirus: cancerhealth.com/coronavirus

I have mixed feelings about telehealth. In some ways, it’s much easier and there’s a sense of security at home, but there’s an element of distance when we aren’t together in the same room.* —Jeff Neurman, Guys With Cancer podcast cohost living with leukemia

minutes away,” says Patricia LoRusso, DO, of Yale University School of Medicine.

Carrying these changes forward after the crisis could enable more people—including those in minority and underserved populations—to participate in lifesaving studies. “Democratization of clinical trials will allow all people to have access to novel treatment for their disease,” LoRusso says.

Communication is key to helping people balance concerns about COVID-19 and cancer progression, taking into account their risk factors, type of cancer and its stage.

“The best course of action requires a detailed discussion between each patient and their oncologist,” Schilsky says.

Medical facilities in some areas are starting to bring patients back for screenings and treatment that can no longer be safely postponed—often with new precautions in place—even as others face further shutdowns. This may not be easy: A survey of more than 500 participants conducted by the Kidney Cancer Research Alliance found that they were equally worried about COVID-19 and cancer progression.

But experts offer reassurance: “It’s safer to come to the hospital than it is to go to the grocery store, and that’s true because we continue to have a high concern for caution and safety,” says Lawrence Shulman, MD, of the University of Pennsylvania Abramson Cancer Center. “We haven’t let down our guard at all.” ■ *Excerpts from Cancer Health at Home: Coping With COVID-19, July 23, 2020. To watch the video, go to cancerhealth.com/athome.

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CancerHealth 21

DIARY

AS TOLD TO MEAVE GALLAGHER AND KATE FERGUSON

A Non-Hodgkin Lymphoma Diary A dedicated student of jiujitsu, Avie Barron, 36, was diagnosed with non-Hodgkin lymphoma in her right lung. Since then, she’s continued to learn how to breathe again.

June 2017 Right after Memorial Day, I got my diagnosis: primary mediastinal large B-cell lymphoma, Stage II. I had an 11 centimeter tumor on my right lung pressing on my artery. That location eliminated surgery as an option—they didn’t want to risk damaging my heart. I started on an aggressive chemotherapy regimen right away. They wanted to keep me in the hospital, but my specialist disagreed: He said just one day of infusion, three or four days of oral treatment and then 21 days of rest. After my first round and a week in the hospital, I was finally able to go home.

August 2017 The first three rounds of chemo were OK, but it got progressively worse. The fourth round really hit me. My hair and my appetite were gone, and

22 CancerHealth FALL 2020 cancerhealth.com

the nausea really started to affect me. Being so active and so young and having young kids—9, 5 and 4—we were always on the go. To just stop and force myself to lie on the couch and rest was really hard.

From top: Avie Barron (in blue) at jiujitsu training in July 2017, during her third round of chemo; Avie and Tim Barron with (from left) children Jamie Lynne, Paige and Elijah

October 2017 After the seventh round of chemo, my doctor raised the possibility of a stem cell transplant. The prospect of having to be in the hospital for three to four months—isolated from my family and not being able to see my kids or to go home to them and tuck them in—was crushing. That’s when it really, really hit Tim and me hard. Our kids started crying and asking big questions: “Is God taking you away from us?”

November 2017 After my last round of chemo, my doctor referred me to a specialist. My PET scan and biopsy showed that my tumor was “dead.” It will never be

(PHOTOS) COURTESY OF AVIE BARRON

May 2017 I kept having serious shortness of breath while doing jiujitsu. The Thursday before Memorial Day, I almost passed out after jogging 20 steps. My husband, Tim, and our jiujitsu coach both insisted that I go to urgent care. I drove myself there and explained my symptoms. They did a chest X-ray, and it was cloudy. They sent me to get a CT scan at a bigger hospital, where they found the tumor.

I had so much fluid in my lungs that they couldn’t release me until the doctor saw me, which wouldn’t be until after the long weekend. The fluid in my right lung caused a crackling sound when I breathed, shortness of breath and coughing. They drained it and sent a biopsy of the mass for testing.

It was intense.

gone, but it was dormant. No transplant! Instead, I would start three weeks of radiation in December.

It was an early Christmas present for all of us.

February 2018 My first scan after the radiation treatment came back clean. I was in remission. Now, I had to start figuring out what life after cancer would be like for me and my family.

April 2018 I gave testimony in my church about my experience.

I was scared, but I felt like I was being called to do it. Our community had done so much for us, stepping in when they saw we needed help, not taking our “No, thank you” for an answer. It was really humbling to see how much our family was loved. My message is: Don’t turn away the help.

January 2019 I started using a lung trainer to break up the scar tissue in my lungs and improve my lung capacity.

It’s very hard. The scar tissue is from the radiation, and my tumor will always be there, so my lung capacity will never be the same. I learn when to push myself and when I need to rest.

(PAPER PIECES) ISTOCK

April 2019 Exactly three years from us signing up for jiujitsu, I was presented with a blue belt.

This blue strip of cloth is going to be my reminder that not only did I beat cancer, but I crushed that voice inside myself that said I couldn’t and shouldn’t continue my martial arts training.

August 2019 Yesterday, my Facebook account did that thing where it showed me a memory from a few years ago. I was well into my third round of chemo, surrounded by some of the fierce ladies I trained with on my team in 2017. Back then, I had no idea if I was going to be able to beat the cancer or if the chemo and radiation were going to make my body so weak that I wouldn’t be able to keep training. But two years later, I’m still training, healthy and happy despite days when the aftermath of chemo hits me harder.

For more first-person stories: cancerhealth.com/stories

February 2020 In the last month, some pain I’ve been feeling in my right breast has gotten worse. So right now, I’m sitting in the waiting room trying to stop nasty thoughts from creeping in. What if this means I have to do chemo and surgery and experience all the side effects all over again?

March 2020 I finally received the results from my visit in the mail with a message saying, “There is no evidence of breast cancer on your mammogram and/or ultrasound.” But the letter came with a disclaimer that even though nothing was found, there could still be something, so I should set up another appointment. But COVID-19 made it extremely difficult to schedule any kind of appointment.

May 2020 I finally booked an appointment with a primary care doctor who said the pain in my breast was normal. I asked if it could be related to my birth control but was told there is no connection.

June 2020 We decided to switch providers, and I was able to see a specialist right away. My IUD was removed, and my doctor confirmed that the birth control was definitely a root cause of many of the symptoms I was told were “normal.”

LYMPHOMA BASICS Lymphoma occurs when white blood cells, usually in the lymph nodes, grow out of control. Primary mediastinal large B-cell lymphoma (PMBCL) is a type of nonHodgkin lymphoma that starts in the space between the lungs behind the breastbone.

It is most common in young women.

PMBCL is often treated with a regimen that includes four chemotherapy drugs and a targeted therapy. Some patients may also receive radiation, stem cell transplants, immunotherapy or CAR-T therapy.

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CancerHealth 23

APPROVED USE YESCARTA is a treatment for your non-Hodgkin lymphoma. It is used when you have failed at least two other kinds of treatment. YESCARTA is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

Before getting YESCARTA, tell your healthcare provider about all your medical problems, including if you have or have had: • Neurologic problems (such as • Liver problems seizures, stroke, or memory loss) • Kidney problems • Lung or breathing problems • A recent or active infection • Heart problems IMPORTANT SAFETY INFORMATION Tell your healthcare provider about all the medications you take, What is the most important information I should know about YESCARTA? including prescription and over-the-counter medicines, vitamins, and YESCARTA may cause side effects that are life-threatening and can lead herbal supplements. to death. Call or see your healthcare provider or get emergency help How will I receive YESCARTA? right away if you get any of the following: • Since YESCARTA is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), • Fever (100.4°F/38°C or higher) • Dizziness or lightheadedness which will concentrate your white blood cells.

• Difficulty breathing • Severe nausea, vomiting, • Your blood cells will be sent to a manufacturing center to make or diarrhea • Chills or shaking chills your YESCARTA. • Fast or irregular heartbeat • Confusion • Before you get YESCARTA, you will get 3 days of chemotherapy to • Severe fatigue or weakness prepare your body.

It is important to tell your healthcare provider that you received YESCARTA • When your YESCARTA is ready, your healthcare provider will give and to show them your YESCARTA Patient Wallet Card. Your healthcare it to you through a catheter placed into your vein (intravenous provider may give you other medicines to treat your side effects. infusion). The infusion usually takes less than 30 minutes.

CAN522680.pgs 05.26.2020 15:40

ESA

THIS IS MORE THAN HOPE.

THIS IS REMISSION.

™

YESCARTA® is the first CAR T-cell therapy approved for adults with certain types of non-Hodgkin lymphoma. YESCARTA empowers your immune system to recognize and destroy cancer cells, making complete remission possible when other treatments fail.

In a clinical study of 101 patients with non-Hodgkin lymphoma who had experienced other treatment failures, YESCARTA helped 51% [52 out of 101] of patients achieve complete remission and 21% [21 out of 101] of patients achieve partial remission. Not all patients in the clinical study who achieved a complete remission remain in remission.

Complete Remission: The disappearance of all signs of cancer in response to treatment.

This does not necessarily mean the cancer has been cured.

Partial Remission: A decrease in the size of a tumor, or in the extent of cancer in the body, in response to treatment.

Learn more at YESCARTA.com

• You will be monitored where you received your treatment daily for at least 7 days after the infusion.

• You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting YESCARTA. Your healthcare provider will help you with any side effects that may occur.

• You may be hospitalized for side effects and your healthcare provider will discharge you if your side effects are under control, and it is safe for you to leave the hospital.

• Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

What should I avoid after receiving YESCARTA? • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get YESCARTA because the treatment can cause sleepiness, confusion, weakness, temporary memory and coordination problems.

• Do not donate blood, organs, tissues, and cells for transplantation.

What are the possible or reasonably likely side effects of YESCARTA? The most common side effects of YESCARTA include: • Fever (100.4°F/38°C or higher) • Low white blood cells (can occur with a fever) • Low red blood cells • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath)

• Fast heartbeat • Confusion • Difficulty speaking or slurred speech • Nausea • Diarrhea

These are not all the possible side effects of YESCARTA. Call your healthcare provider about any side effects that concern you. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see Important Facts about YESCARTA, including important warnings, on the following page.

YESCARTA, the YESCARTA logo, THIS IS MORE THAN HOPE. THIS IS REMISSION., KITE, and the KITE logo are trademarks of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc. © 2020 Kite Pharma, Inc. All rights reserved. YESC0154 Version date: 05/2020

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IMPORTANT FACTS

This is only a brief summary of important information about YESCARTA and does not replace talking to your healthcare provider about your condition and your treatment.

(yes-kar-ta) THE MOST IMPORTANT INFORMATION TO KNOW ABOUT YESCARTA® YESCARTA may cause side effects that are life-threatening and can lead to death. Call or see your healthcare provider or get emergency help right away if you get any of the following: • Fever (100.4°F/38°C or higher) • Difficulty breathing • Chills or shaking chills • Confusion • Dizziness or lightheadedness • Severe nausea, vomiting, or diarrhea • Fast or irregular heartbeat • Severe fatigue or weakness It is important to tell your healthcare provider that you received YESCARTA and to show them your YESCARTA Patient Wallet Card. Your healthcare provider may give you other medicines to treat your side effects.

ABOUT YESCARTA YESCARTA is a treatment for your non-Hodgkin lymphoma.

It is used when you have failed at least two other kinds of treatment. YESCARTA is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

BEFORE RECEIVING YESCARTA, TELL YOUR HEALTHCARE PROVIDER ALL ABOUT YOUR MEDICAL PROBLEMS, INCLUDING IF YOU HAVE OR HAVE HAD: • Neurologic problems (such as seizures, stroke, or memory loss) • Lung or breathing problems • Heart problems • Liver problems • Kidney problems • A recent or active infection Tell your healthcare provider about all the medications you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

HOW YOU WILL RECEIVE YESCARTA • Since YESCARTA is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), which will concentrate your white blood cells.

• Your blood cells will be sent to a manufacturing center to make your YESCARTA.

(continued)

• Before you get YESCARTA, you will get 3 days of chemotherapy to prepare your body.

• When your YESCARTA is ready, your healthcare provider will give it to you through a catheter placed into your vein (intravenous infusion). The infusion usually takes less than 30 minutes.

• You will be monitored where you received your treatment daily for at least 7 days after the infusion.

• You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting YESCARTA. Your healthcare provider will help you with any side effects that may occur.

• You may be hospitalized for side effects and your healthcare provider will discharge you if your side effects are under control, and it is safe for you to leave the hospital.

• Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

WHAT TO AVOID AFTER RECEIVING YESCARTA • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get YESCARTA because the treatment can cause sleepiness, confusion, weakness, temporary memory and coordination problems.

• Do not donate blood, organs, tissues, and cells for transplantation.

THE POSSIBLE OR REASONABLY LIKELY SIDE EFFECTS OF YESCARTA The most common side effects of YESCARTA include: • Fever (100.4°F/38°C or higher) • Low white blood cells (can occur with a fever) • Low red blood cells • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath) • Fast heartbeat • Confusion • Difficulty speaking or slurred speech • Nausea • Diarrhea These are not all the possible side effects of YESCARTA. Call your healthcare provider about any side effects that concern you. You may report side effects to the FDA at 1-800-FDA-1088.

GET MORE INFORMATION • This is only a brief summary of important information about YESCARTA. Talk to your healthcare provider to learn more.

• Visit www.YESCARTA.com or call 1-844-454-KITE (5483).

YESCARTA, the YESCARTA logo, KITE, and the KITE logo are trademarks of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc. © 2020 Kite Pharma, Inc. All rights reserved. YESC0154 Version date: 05/2020

CAN522682.pgs 05.26.2020 15:43

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BY ABBY SAJID

YOUR TEAM

Sexual Medicine

Gynecologist Stacy Tessler Lindau, MD, is director of the Program in Integrative Sexual Medicine for Women and Girls with Cancer at the University of Chicago Medicine.

CANCER AND ITS TREATMENT often cause changes in and difficulty with sexual function. A team approach can help prevent or overcome these problems.

What does a sexual medicine program do?

The ideal function is to prevent predictable sexual function problems as a result of cancer and cancer treatment. However, mostly, we care for patients who’ve developed sexual function problems after treatment.

COURTESY OF UCHICAGO MEDICINE

What are some sexual issues people with cancer face?

Most cancers that people survive directly affect one or more sexual organs. For men, prostate cancer is the most common cancer that they survive.

For women, it’s breast cancer and then gynecologic and colorectal cancers. Even head and neck cancers can make it hard to kiss. And chemotherapy, antihormone treatments and radiation can interfere with sexual function.

What issue is most common?

It’s pain with sex. Antihormone medicines, for example, deprive a woman of the estrogen that plays an important role in maintaining the functioning of the vagina, the vulva, the urethra, the clitoris. Without estrogen, sex can become very painful. Many Who’s on your team? cancerhealth.com/team

Education and a little medicine can improve relationships, says Stacy Tessler Lindau, MD.

women also complain of loss of libido. Many mechanisms can affect libido, but pain and treatments are two common ones.

What care do you provide?

The ideal approach is multidisciplinary. I work with oncologists directly, so if we’re talking about local hormone replacement, we do that as a team. I also work with pelvic floor physical therapists, with cancer psychologists trained in sex therapy and couples therapy, and with psychiatrists.

Sometimes specialties like sleep medicine or weight management are important— poor sleep and body image changes from cancer are common and reversible causes of low libido.

Do all cancer centers have sexual health experts?

A growing number do. Both men and women who experience sexual problems should raise their concerns with their cancer team. If you’re seeing a psychologist to help manage the stress of cancer, raising your sexual function concerns is appropriate.

Physical therapists also know experts who know how to help with sexual function problems.

For men, care to preserve and restore sexual function after cancer actually is more well established than care for women.

(The problems of sexual function after cancer were brought to light in 1998 by Senator Bob Dole at the time that Viagra was introduced.) Start with your oncologist or, if your cancer treatment was in the past, with your primary care physician.

For women, if your oncologist doesn’t know where you can go, a gynecologist is a reasonable place to start. We’ve created an online resource to share patient education materials and insights.

It’s called WomanLab.org.

What keeps you motivated?

What inspires me is how a little validation and education and a minimal amount of medicine can go such a long way, not just in restoring a person’s sexual function but in restoring their relationships and their happiness. ■

cancerhealth.com

FALL 2020

CancerHealth 27

HOW TO

BY KATE FERGUSON

Simple strategies can help minimize or avoid hair loss due to cancer treatment.

Care for Your Hair

Tips for managing treatment-related hair loss and thinning ONE OF THE MOST UPSETTING SIDE EFFECTS OF CANCER TREATMENT is hair loss (alopecia). This most commonly affects the scalp but may also affect the eyebrows and eyelashes as well as armpit, leg and pubic hair. It’s normal to fear losing some or all of your hair, but there are steps you can take to minimize the damage and look your best.

Understand how treatment may affect your hair. Many chemotherapy drugs and radiation treatments to the scalp damage healthy cells, including hair follicles, along with cancer cells. Ask your medical team whether you should expect hair loss from your treatment and how quickly this might happen. The good news is that hair lost from anywhere on the body almost always grows back, usually one to three months after chemo ends.

Check out cooling caps. Food and Drug Administration–approved ice caps can help save hair. During a chemotherapy infusion, you wear a cap that circulates cooled liquid controlled by a computer; a second cap keeps the cold from escaping. The cold restricts blood vessels in the scalp so little or no chemo agents reach the hair follicles, which helps mitigate hair loss.

Side effects may include headaches, chills and scalp pain. Ask your cancer care team whether this might be a good option for you and whether insurance will cover it. Some nonprofits help pay for cooling caps.

Learn to care for your hair and scalp after treatment. Handle hair gently with minimal use of heat appliances. Many people shave their heads. If your scalp is exposed, protect it from heat, cold and sun with a hat or scarf and opt for a broad-spectrum sunscreen with an SPF of at least 30.

Cover in style. Wigs may be covered by insurance if a prescription is written for a “cranial prosthesis.” Trendy scarves, caps or wraps made from breathable, soft fabrics, such as cotton or bamboo rayon, may also be partially or fully covered by insurance, so be sure to check.

Prepare for your new hair. Once hair grows back, its thickness, texture or color may differ—a change that might be fleeting or permanent. Fragile new hair may break easily, so avoid perms and dyes for the first few months. ■

28 CancerHealth FALL 2020 cancerhealth.com

1

Ask your care team whether your treatment might trigger hair loss and, if so, what to expect.

2

Consider scalp cooling, which may minimize or prevent treatmentrelated hair loss.

3

Be gentle with your hair after treatment; protect exposed scalp from heat, cold and sun.

4

Ask about programs that offer free or inexpensive wigs or other head coverings.

5

Avoid harsh treatments, such as perms and dyes, for the first few months.

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5 KEY HAIR CARE TIPS

BY ALICIA GREEN

RESOURCES

Wellness Toolbox FINDING WAYS TO STAY PHYSICALLY ACTIVE, EAT well, connect with others and ease stress are part of every cancer patient’s and survivor’s wellness journey.

These resources can help.

Livestrong at the YMCA livestrong.org/what-we-do/ program/livestrong-at-the-ymca

Are you a survivor looking to get back on your feet? This partnership between Livestrong and the YMCA promotes physical activity after cancer treatment.

Cancer survivors are invited to participate in free or low-cost exercise regimens customized by certified fitness instructors.

Contact your local Y to find out whether the program is available in your area or online.

Look Good Feel Better

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lookgoodfeelbetter.org/virtualworkshops

Women who want to learn more about skin care, makeup, wigs and head coverings to help manage the appearance-related side effects of cancer treatment can tune in to Look Good Feel Better’s workshops, offered virtually in both English and Spanish during the coronavirus pandemic.

Wellspring Global wellspring.global

Wellspring Global brings stress management and wellness resources into your home for free.

The website hosts live events for cancer patients and survivors and offers recorded classes on Discover more resources: cancerhealth.com/resources

yoga, mindfulness, meditation, qi gong, exercise, nutrition and cooking, and better sleep.

National Center for Complementary and Integrative Health nccih.nih.gov

American Institute for Cancer Research aicr.org

When treatment ends, cancer survivors must learn to navigate a new normal. AICR’s iTHRIVE program is a free educational tool that helps survivors create an integrative approach to health through personalized, physicianapproved wellness plans. AICR’s recipes for a variety of appetizers, entrees and other dishes, including vegetarian choices, can also help with the nutritional side of living with cancer.

Cancer Support Community cancersupportcommunity.org

Cancer Support Community knows that social support is a key element of wellness, which is why it’s transforming the cancer experience through community and connection. It offers a variety of resources, including the Cancer Support Hotline (888-793-9355), the Cancer Experience Registry for sharing your journey with other people living with cancer and an online community that brings together patients, caregivers and loved ones.

The NCCIH provides sciencebased information on the usefulness and safety of complementary health approaches for cancer prevention, treatment and symptom management, including herbal supplements, acupuncture, massage and yoga.

Society for Integrative Oncology integrativeonc.org

Anyone who wants to learn more about integrative oncology can visit the SIO website for comprehensive evidence-based guidelines, clinical trial information and tips on how to find credible, science-based information on the internet.

Community Mindfulness Project communitymindfulnessproject.org

In addition to offering free audio-guided meditations and a weekly blog, Community Mindfulness Project encourages people to tune in to its free daily meditation sessions via phone dial-in (857-799-9498).

These 17 live, science-based meditations will help support your overall well-being.

cancerhealth.com

FALL 2020

CancerHealth 29

GOOD STUFF

BY KATE FERGUSON

FALL BACK TO CARE Try soothing products that nourish and pamper.

Rock the Treatment specializes in creating gift boxes for men, women and children with specially selected items that help alleviate some common side effects of chemotherapy.

This Large Chemo Basket for Men ($159.99) is chock-full of a variety of premium skin and oral care products for dry skin and mouth, cozy socks and a knit cap for warmth, a soothing eye pillow, hand sanitizer, puzzle books to pass the time during treatment and notecards for writing to family and friends as well as tasty, healthy and nourishing snacks.

After makeup artist Karissa Bodnar lost a friend to cancer, she founded Thrive Causemetics, a vegan beauty brand that seeks to empower women. Each purchase helps fund in-kind donations to causes such as women fighting cancer, surviving domestic abuse or seeking a path out of homelessness. Try the Brilliant Eye Brightener ($24) to hydrate the delicate eye area and give your peepers an instant lift.

The Alra Care ChemoKit ($45) contains four full-size skin care products specifically formulated for chemo patients. Alra Therapy Lotion, Alra Mild Conditioning Shampoo, Alra Non-Metallic Deodorant and Alra All Vegetable Unscented Mild Soap are free of artificial fragrances, artificial colorants and harsh preservatives. The brand’s founders include a radiation oncologist and a cosmetic chemist.

The offbeat graphic novel About Betty’s Boob ($19.99), by Vero Cazot and Julie Rocheleau, treats readers to a light and airy depiction of the usually heavy subject of breast cancer. When the yarn’s central character, Betty, loses her left breast, her job and her boyfriend to cancer, she must grapple with a new normal. Her journey takes her through a landscape peopled with interesting characters and adventures that ultimately help Betty accept and celebrate her new body. At the same time, readers are offered a chance to reflect on how society regards women’s breasts and their experience of this cancer— and the side effects of its treatment—which strikes so directly at femininity and self-esteem.

Carol Galland launched Headcovers Unlimited after she was diagnosed with breast cancer in 1989; she survived for 20 more years. Now, her daughter, Danielle Galland-Yates, runs the business, which continues to offer people with cancer comfortable, flattering, practical and affordable wigs (for eyebrows too!); hats, scarves ($4.99 to $45.99) and clothing; beauty products; and a slew of personal items and accessories. The brand’s website also includes tips on how to manage the physical and emotional effects of cancer treatment. (For more on hair care after treatment, see How To, page 28.)

30 CancerHealth FALL 2020 cancerhealth.com

Find more products to make life easier: cancerhealth.com/good-stuff

Knowledge is power.

Understanding what cancer

clinical trial options are available to

you and your loved ones can make all the difference.

CEDRIC THE ENTERTAINER Stand Up To Cancer Ambassador

Photo By JEFF KATZ

WATCHING MY MOTHER GO THROUGH HER CANCER DIAGNOSIS TAUGHT ME THE IMPORTANCE OF CLINICAL TRIALS. When my mom was diagnosed with uterine cancer, I knew that I wanted her to have access to the best treatments available. The journey taught me about the importance of learning all that you can about the options available to you. I want all people diagnosed with cancer to have access to the treatments that can help them become long-term survivors.

Cancer clinical trials may be the right option for you or a loved one. The more information you have about clinical trials, the more empowered you will be to seek out your best treatments.

Learn more at StandUpToCancer.org/ClinicalTrials Stand Up To Cancer is a division of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization.

CAN524493.pgs 08.19.2020 13:40

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LIFE WITH CANCER

BY JULIE MIZRAJI

My Birthday Race IN 2015, AT AGE 24, I WAS diagnosed with Stage II breast cancer. My life went from playing sports, working and dating to doctor appointments, wig shopping and hospital visits. This whirlwind of emotion and action included surgery, chemo and radiation. I came out on the other side cancer-free, but that was short-lived.

Four years later, a routine MRI showed that my breast cancer had spread to my lungs. I now have Stage IV metastatic breast cancer, and there is no cure. I will live with this and be treated for it for the rest of my life. At first, I was beyond devastated, but after learning about all the available treatment options, I became more optimistic about my future. Moreover, I had limited side effects on my new oral immunotherapy drug, and I felt comfortable in this new normal.

Several months later, the COVID-19 pandemic hit, and I suddenly lost many things that gave me joy—my weekly soccer games, my gym and workout partners and, most important, my drive to better myself. I felt very unmotivated and uninspired.

I spoke to my friends, family and my therapist about how to live with purpose again, and then one day, the idea came to me: I would train for a half-marathon and run it on my 30th birthday, in four months.

32 CancerHealth FALL 2020 cancerhealth.com

I researched a training plan online and bought new running shoes, and off I went! Having a structured schedule of three runs a week (two shorter, one longer) changed my daily life dramatically.

I was now motivated to go to sleep earlier, eat healthier and hydrate more. In the last three months, I’ve explored more of Massachusetts on foot than I have in the last six years. I’ve learned about pacing and fueling and how to control my breathing.

With every run, I feel more accomplished and proud. Not

every run is perfect, but I never regret getting out because I know that half the battle is just showing up.

Recently, I realized that my birthday half-marathon means more to me than establishing a routine again and reaching for a new goal. Running 13.1 miles is also the ultimate “f--- you” to my cancer because not only will I prove that I am still strong, if not stronger, I will do it using my lungs—the part of me where my cancer has spread.

When I was diagnosed as Stage IV, I thought I’d lost the ability to dream and pursue the life I wanted. My future felt so uncertain. TrainJulie Mizraji ing for my halftraining marathon has on a Cape Cod trail shown me that I can still set and accomplish goals, with even more vigor and fight than I had before.

Since official races are not safe during this pandemic, I have had to get creative. I will run a route along the Charles River in Waltham, cheered along the course by my friends and family, and I will be dedicating each mile to important people in my life.

My birthday may not be spent traveling to Europe like I once dreamed. But celebrating 30 years of life by running 13.1 miles may be the best present yet. ■ For more first-person essays: cancerhealth.com/stories

COURTESY OF JULIE MIZRAJI

Julie Mizraji is the intramural sports coordinator at Brandeis University in Waltham, Massachusetts. She has metastatic breast cancer.

SURVEY

Do you use any of these methods to help manage your stress? (Check all that apply.) ❑ Deep breathing ❑ Exercise ❑ Listen to music ❑ Meditate ❑ Take a bath ❑ Write/journal Yoga ❑ ❑ None of the above

STATE OF WELLNESS

Wellness is defined as the quality or state of being healthy in both body and mind, especially as the result of deliberate effort. Take our survey and let Cancer Health know about wellness in your life.

Do you have relationships with people who make you feel good about yourself? ❑ Yes ❑ No Do you have a network of people you can rely on for support? ❑ Yes ❑ No How often do you exercise? ❑ Once a week ❑ Several times a week ❑ Every day ❑ I don’t exercise regularly.

Do you utilize any wellness services provided through your cancer treatment center? ❑ Yes ❑ No How easily do you adapt to change? ❑ Very easily ❑ Somewhat easily ❑ Not easily Do you regularly find ways to stimulate and challenge yourself mentally? ❑ Yes ❑ No Do you feel like your life has purpose? ❑ Yes ❑ No What year were you born? _ _ _ _

Do you maintain a healthy and balanced diet? ❑ Yes ❑ No

What is your gender? ❑ Male ❑ Female ❑ Transgender ❑ Other

Do you get enough sleep each night? ❑ Yes ❑ No

What is your current level of education? ❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher

Do you smoke cigarettes? ❑ Yes ❑ No Do you drink alcohol? ❑ Frequently ❑ Occasionally ❑ I don’t drink alcohol.

Do you wear a face mask to protect yourself and others against COVID-19? ❑ Always ❑ Sometimes ❑ Never

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Do you regularly take time to unwind and relax? ❑ Yes ❑ No

How often do you feel stressed? ❑ All the time ❑ Fairly often ❑ Not very often ❑ Never

What is your annual household income? ❑ Less than $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999 ❑ $50,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more What is your ethnicity? (Check all that apply.) ❑ American Indian/Alaska Native ❑ Arab/Middle Eastern ❑ Asian ❑ Black/African American ❑ Hispanic/Latino ❑ Native Hawaiian/Pacific Islander ❑ White ❑ Other _________________________ What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at cancerhealth.com/survey. Or scan or take a photo of the completed survey and email it to website@cancerhealth.com.

Chemotherapy may destroy your cancer, but it doesn’t have to destroy your hair. “ Not having that reminder every time you look in the mirror that you are sick, and you look normal to your friends and family, made the chemo much more bearable. Instead of illness, I saw myself. Many people had no idea I had cancer.”

- Carolyn Dempsey, NY

PRO-20190816-01-EN

DigniCap is FDA cleared to minimize hair loss in patients with solid tumors undergoing chemotherapy.

Learn more at dignicap.com

CAN515844.pgs 08.23.2019 16:37

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