Cancer Health Spring 2022 by Smart + Strong

A SMART+STRONG PUBLICATION CANCERHEALTH.COM SPRING 2022 $3.99

THE ART OF LIVING WITH CANCER

A sculptor’s journey A New Way to Target Tumors

MBC: The Power of Breathing How to Think Without Fear A Multiple Myeloma Diary Yoga for Men

The Question That Saved One Man’s Life

Shelley Kerr

IN THE SEARCH FOR A CURE, THEY KNOW EXACTLY WHERE THEY STAND. ON THE SHOULDERS OF GIANTS. For 75 years, Damon Runyon has provided funding to scientists who bet their careers on high-risk, high-reward hypotheses, concepts, and strategies. In this time, Damon Runyon scientists have advanced cancer research exponentially – because each one builds upon the achievements of those who came before. As we celebrate this milestone of scientiﬁc achievement, we honor the scientists who have contributed to this legacy and continue to carry it forward. With them, we look to the future.

Alexandra-Chloé Villani, PhD Current Damon RunyonRachleff Innovator

To learn more, visit damonrunyon.org

Gordon J. Freeman, PhD Damon Runyon Fellow ’79–’81

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CONTENTS

E xclusively on

Shelley Kerr working on her Trojan horse sculpture, Breakthrough

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 Basics section on cancer treatment, managing side effects and much more. cancerhealth.com/basics

Science News

COVER: JULIA VANDENOVER; (KERR) COURTESY OF SHELLEY KERR; (HEART SPEECH BUBBLE, IV TREATMENT) ISTOCK

Learn about the latest treatment advances, cure research and conference news. cancerhealth.com/science-news

Cancer Health Digital Scan the QR code (left) with your smartphone to check out the digital issue of Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.

16 THE ART OF LIVING WITH CANCER While treatment keeps her Stage IV bladder cancer at bay, Shelley Kerr, 66, taps into her creativity. BY JENNIFER COOK 20 SPECIAL DELIVERY A new type of cancer treatment uses antibodies to deliver chemotherapy drugs directly to tumors. BY LIZ HIGHLEYMAN 2 From the Editor Smarter 4 Care & Treatment COVID-19 treatment and PrEP for people with cancer | HPV vaccine cuts cervical cancer risk | how diet affects cancer treatment | yoga improves quality of life

12 A Multiple Myeloma Diary Kellie Smith will never again take sleeping in her bed for granted. 14 Basics Bladder cancer treatment 24 Life With Cancer Goodbye to catastrophic fantasies!

6 News Changing rural minds | Chris Evert’s luck | exercise for people with bone metastasis | a delicious way to drink your calories

26 Resources Serving the LGBTQ community

8 Voices Lesley Kailani Glenn, who has metastatic breast cancer, on breathing

30 Good Stuff A pain-easing hat...and much more

11 Voices Mark Hoffman may have saved his life with a question.

28 Your Team A breast cancer surgeon’s role

32 Solutions Lifesaving nutrition care 33 Reader Survey

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CancerHealth 1

FROM THE EDITOR

Cancer Health TM

Smarter

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breast cancer surgery (page 28), LGBTQ resources (page 26) and malnutrition prevention (page 32). A cancer diagnosis can also be a teacher. For patient advocate Dena Battle, her husband’s cancer diagnosis helped her understand “The Futility of Catastrophic Thinking” (page 24). For Lesley Kailani Glenn, a diagnosis of metastatic breast cancer helped her remember how to breathe again (page 8). What would you like to learn more about? Please take our Reader Survey (page 33).

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 Sarah Pursell 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

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

Cancer Health (ISSN 2688-6200) Issue No. 17. Copyright © 2022 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.

Cancer Health is BPA audited.

(BARNETT) MICHAEL HALLIDAY; (BULB ILLUSTRATION) ISTOCK

EVERY SCHOOLCHILD KNOWS the story of the Trojan horse. The Greeks, feigning defeat, left the huge wooden sculpture as a gift for the Trojans, but inside, according to the Aeneid, they had hidden an army of elite warriors. The mythic tale is an apt metaphor for antibody-drug conjugates (ADCs), a promising new approach that uses antibodies to deliver chemotherapy drugs directly to tumors (“Special Delivery,” page 20). An ADC certainly transformed Colorado sculptor Shelley Kerr’s prognosis, and she in turn evokes the ancient subterfuge in her sculpture Breakthrough (“The Art Of Living With Cancer,” page 16). Outsmarting tumors takes new science. But it also takes new ways to navigate a knowledge explosion. In “Patient, Know Thyself” (page 11), Mark Hoffman learned enough from the chronic lymphocytic leukemia community to ask a question that may have saved his life. In “A Multiple Myeloma Diary” (page 12), Kellie Smith chronicles the close collaboration between her hometown oncologist and an academic cancer center expert. There are many ways to get smarter in this issue. In Care & Treatment (page 4), get the latest on COVID-19 protection as well as the HPV vaccine and cervical cancer prevention, and discover the best diet for immunotherapy. In News (page 6), learn how tennis great Chris Evert’s attention to the latest genetic research led to an earlystage ovarian cancer diagnosis. Learn about bladder cancer (page 14),

EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman SENIOR EDITOR Kate Ferguson DEPUTY EDITOR Trent Straube NEWS WRITER Sukanya Charuchandra COPY CHIEF Joe Mejía ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; Timothy Henrich, MD; Carl June, MD; Leigh Leibel, MSc; Yung Lie, PhD; Gilberto Lopes, MD; Jennifer L. McQuade, MD; Amelie Ramirez, DPH; Hope Rugo, MD; Kelly Shanahan, MD; Carla Tardif FEEDBACK Email: info@cancerhealth.com

CONFERENCES 7u1-ঞom-Ѵ 1om=;u;m1;v om 1-m1;uŊu;Ѵ-|;7 |orb1v bm1Ѵu7bm]Ĺ � &m7;uv|-m7bm] youu _;-Ѵ|_ bmvuu-m1; orঞomv � -m-]bm] l;7b1-Ѵ 0bѴѴv � ow |o ];| _;Ѵr wouhbm] |_uou]_ |u;-|l;m| ou |-hbm] ঞl; o@ � rrѴybm] =ou 7bv-0bѴb|y bmvuu-m1; � 11;vvbm] Cm-m1b-Ѵ _;Ѵr � v|-|; rѴ-mmbm] � ...-m7 lou;Ĵ

WEBINARS &ƌĞĞ ĞĚƵĐĂƟŽŶĂů ǁĞďŝŶĂƌƐ ŽŶ ƉƌĂĐƟĐĂů ƚŽƉŝĐƐ, ƐƵĐŚ ĂƐ ǁŽƌŬ, ƐĐŚŽŽů, ŝŶƐƵƌĂŶĐĞ, ĂĚǀŽĐĂĐǇ, ĐĂƌĞŐŝǀŝŶŐ, ĮŶĂŶĐĞƐ, ĞǆĞƌĐŝƐĞ, ĂŶĚ ŶƵƚƌŝƟŽŶ. Open to everyone!

Open to everyone! Free u;]bv|u-ঞomķ ]b[ 0-]vķ ş rubz;vĴ Ύ&ƌĞĞ ĐŽŶƚĂĐƚ ŚŽƵƌƐ/ Ɛ/W Ɛ ĨŽƌ ŶƵƌƐĞƐ, ƐŽĐŝĂů ǁŽƌŬĞƌƐ, ďŽĂƌĚ ĐĞƌƟĮĞĚ ƉĂƟĞŶƚ ĂĚǀŽĐĂƚĞƐ, Θ ,Z ƉƌŽĨĞƐƐŝŽŶĂůƐ.

TriageCancer.org/Conferences

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CARE & TREATMENT

BY LIZ HIGHLEYMAN

COVID-19 TREATMENT, PEP AND PREP Some people undergoing cancer treatment—especially those with blood cancers—do not respond well to COVID-19 vaccines, leaving them at risk for severe illness. But early treatment and pre- or post-exposure prophylaxis (PEP or PrEP) using antiviral pills or monoclonal antibodies could be gamechanging. PEP is intended for people who have recently been in close contact with someone who has the coronavirus, while PrEP is taken before exposure to preemptively prevent infection or illness. On December 22, the Food and Drug Administration (FDA) granted emergency use authorization of Paxlovid (nirmatrelvir plus ritonavir), the ﬁrst antiviral

pill for COVID-19. Clinical trial participants who received Paxlovid within three days of developing symptoms had an 89% lower risk for hospitalization or death. A day later, the agency authorized a second antiviral, molnupirivair, which reduced the risk by 30% for those treated within ﬁve days. Both antivirals are indicated for people who test positive for SARS-CoV-2, have mild to moderate symptoms and are at risk for severe illness. The IV antiviral remdesivir (Veklury) is also used to prevent disease progression. Monoclonal antibodies are another option, but some

approved antibodies are no longer effective against the SARS-CoV-2 omicron variant. The FDA has authorized Evusheld (tixagevimab plus cilgavimab) as PrEP for immunocompromised people, including cancer patients who remain unprotected despite vaccination. A single dose of Evusheld reduces the risk of symptomatic COVID-19 by about 80%, and protection may last six months. Antiviral pills are also being studied for PEP and PrEP for people at high risk for severe disease.

A study from the United Kingdom provides further real-world evidence that human papillomavirus (HPV) vaccines dramatically lower the risk of cervical cancer. One of the most common sexually transmitted infections, HPV triggers abnormal cell growth that can lead to precancerous cell changes and, if left untreated, cancer of the cervix, anus, vulva, vagina, penis, mouth and throat. The Gardasil 9 vaccine protects against nine types of HPV. The Centers for Disease Control and Prevention recommends vaccination for girls and boys at ages 11 or 12. As reported in The Lancet, Peter Sasieni, PhD, of King’s College London, and colleagues analyzed data on all cervical cancer cases diagnosed among women in England between January 2006 and June 2019. HPV vaccination

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reduced cervical cancer incidence by 34% for young women who received the shots at ages 16 to 18, by 62% for those who were vaccinated at ages 14 to 16 and by 87% for those who were vaccinated at ages 12 or 13. The team estimated that the U.K. vaccination program prevented 17,235 cases of advanced precancerous cell changes and 448 cases of cervical cancer over 11 years. “We’ve known for many years that HPV vaccination is very effective in preventing particular strains of the virus, but to see the reallife impact of the vaccine has been truly rewarding,” Sasieni says. “Assuming most people continue to get the HPV vaccine and go for screening, cervical cancer will become a rare disease.”

ALL IMAGES: ISTOCK (MOEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

HPV Vaccine Cuts Cervical Cancer Risk

DIET AFFECTS CANCER GROWTH AND TREATMENT Recent research suggests that diets that mimic fasting— severe calorie restriction for most of the day or for several days per week—deprive cancer of fuel needed for rapid growth. Matthew Vander Heiden, MD, PhD, of the Koch Institute for Integrative Cancer Research at MIT, and colleagues found that calorie restriction lowered glucose and lipid levels and slowed tumor growth in mice with pancreatic tumors. Another study found that severely restricting calories for five days a week led to an increase in cancer-killing CD8 T cells and a decrease in immunesuppressing cells in patients undergoing cancer treatment. For appropriate patients, calorie restriction is “a safe, inexpensive and potentially effective approach” that could easily be combined with standard cancer treatment, says Claudio Vernieri, MD, PhD, of the IRCCS National Tumor Institute in Italy. Other research adds to the evidence that the gut microbiome—the ecosystem of bacteria and other microorganisms in the intestines—plays a role in immune response. Jennifer Wargo, MD, of the University of Texas MD Anderson Cancer Center, and colleagues analyzed fecal microbiota, diet and use of probiotic supplements in melanoma patients treated with checkpoint inhibitor immunotherapy. Consuming enough dietary fiber—from fruits, vegetables and whole grains—was linked to longer progression-free survival. For every five-gram increase in daily fiber consumption, the risk of cancer progression or death dropped by 30%. Conversely, use of probiotic supplements was associated with poorer response. In studies of mice with melanoma, probiotic use was linked to weaker response to immunotherapy, larger tumors and fewer T cells in tumors, while higher fiber intake was associated with higher T–cell levels and slower tumor growth. “Our study sheds light on the potential effects of a patient’s diet and supplement use when starting treatment with immune checkpoint blockade,” says Wargo. “These results provide further support for clinical trials to modulate the microbiome with the goal of improving cancer outcomes using dietary and other strategies.” For more care and treatment news: cancerhealth.com/science-news

Yoga Improves Quality of Life Yoga therapy for men with prostate cancer helped increase quality of life and led to improvements in inflammation and immune function, according to research published in Nature Prostate Cancer. Diagnosis and treatment of prostate cancer can lead to anxiety, fear, depression and psychological stress, and this can have a negative effect on immune function. Dharam Kaushik, MD, of the University of Texas, and colleagues designed a randomized clinical trial to evaluate a yoga therapy program for men with newly diagnosed prostate cancer who were scheduled for surgery. Those assigned to the program participated in hatha yoga sessions for 60 to 75 minutes at least twice a week, performed breathing exercises and practiced pelvic floor engagement during seated meditation. The men who did yoga had higher quality-of-life scores, with improvements in functional, physical and social well-being, sexual function and fatigue. What’s more, they had more robust immune responses and lower levels of inflammation, with increases in cancerfighting CD4 and CD8 T cells and decreases in immune cells that suppress antitumor activity. “This is positive data, and further large-scale studies are needed,” Kaushik says. “If we are able to encourage patients to do a small, inexpensive and easy-to-implement intervention that can have a big impact, then why not?”

NEWS

BY BOB BARNETT

DRINK YOUR CALORIES

CHANGING MINDS Compared to their urban counterparts, people in rural America are less likely to be screened for cancer and more likely to be diagnosed at a later stage and have poorer outcomes. Access to care plays a role. According to the National Cancer Institute, 70% of rural counties have no medical oncologist. “The access gap is real,” says University of Utah communications professor Jakob D. Jensen, PhD, who grew up in a town of 600 in rural Montana. “If you have to drive four hours to see a doctor, you’re less likely to do it.” But attitudes can be barriers too. In a study published in Cancer Epidemiology, Biomarkers & Prevention, Jensen and colleagues surveyed 10,362 adults—3,821 of them rural—in 12 U.S. cancer centers across the country. Rural participants, they found, were more likely to believe “everything causes cancer,” “there are too many different recommendations about cancer prevention” and “cancer is always fatal.” Why such fatalism? Jensen believes it’s a coping mechanism. “When people lack access to infrastructure, they cope by

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saying, ‘It doesn’t matter,’” he says. “The brain doesn’t want to say, ‘I don’t have access to health care.’” Bridging the cancer care gap, he says, will take not only more buildings and oncologists and greater use of mobile technologies, such as telehealth, but also “smart, empathic messaging.” That starts with acknowledging what a person believes. Utah, he notes, leads the country in melanoma diagnoses, so when someone tells him that “everyone is going to get skin cancer,” he’ll acknowledge that a lot of people will get skin cancer. “But that doesn’t mean you can’t prevent it,” he says. “And you can double down on detection. I might say, ‘You need to know what it looks like, what to do if you think you see it.’” He’ll clue the person in on advances in treatment that have dramatically improved survival, even for many late-stage melanomas. He’ll let the person know that even if they knew someone who had it years ago, things are different now. “That may resonate, so that a person thinks, Maybe I haven’t looked at this in a while.”

If you’re too tired to eat—let alone cook—or your appetite is flagging, a high-protein smoothie can be an easy, filling option. Plus, it can help soothe mouth sores caused by radiation or chemo. This banana oat smoothie from Cook for Your Life (cookforyourlife.org) is packed with protein and anti-inflammatory omega-3 fat from flaxseed and has a delicious, chewy consistency. Pour into your blender: 1 cup whole milk, 1 tbsp nut butter, 1 large banana, 5 to 6 ice cubes, ¼ cup rolled oats, ½ tsp vanilla extract, ¼ cup protein powder, ½ tsp cinnamon, a pinch of nutmeg, 1 tbsp flaxseed meal and 1 tbsp honey. Blend on high until smooth, and serve immediately. Serves one. Each serving has 894 calories, 29 grams of fat, 103 grams of carbohydrates, 67 grams of sugar, 14 grams of fiber, 63 grams of protein and 760 milligrams of sodium. Tip: Choose a plain unflavored plant protein (such as whey) that is free of additives, herbs and supplements. © 2022 Fred Hutchinson Cancer Research Center, a 501(c)(3) nonprofit organization Get more cancer news: cancerhealth.com/news

(LANDSCAPE AND MAN EXERCISING) ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY); (SMOOTHIE) SHUTTERSTOCK.COM/LILIYA KANDRASHEVICH; (EVERT) SHUTTERSTOCK.COM/DEBBY WONG

EVERT’S LUCK Chris Evert, 67, ranked No. 1 in singles tennis for seven years in the ’70s and early ’80s, lost her sister Jeanne Evert Dubin to ovarian cancer in 2020. But that tragedy may have saved her life. When Dubin was diagnosed in 2017, she tested negative for the harmful variants of the BRCA1 gene that are associated with cancer, so Evert and other family members were discouraged from undergoing genetic tests, according to ESPN.com. But recent advances in genetic testing identiﬁed the variant that Dubin did have as a risk factor. So in October 2021, Evert had her blood tested. She, too, had that BRCA1 variant. In December 2021, she underwent a preventive hysterectomy, but post-surgery pathology revealed a tumor in her fallopian tubes. Further surgery revealed no lymph node involvement; her Stage I ovarian cancer had been removed during the original surgery. “I don’t remember being that happy in years,” says Evert, who is undergoing six weeks of chemotherapy to prevent recurrence. Her early diagnosis is particularly remarkable because ovarian cancer most often goes unnoticed until later stages. According to Evert’s surgeon, Cleveland Clinic ob-gyn Joel Cardenas, MD, 70% to 80% of ovarian cancer is diagnosed at Stage III or IV. “Three months or so from now, she’d be Stage III or IV,” he says. His advice: “Ovarian cancer is rare. However, if a patient has a family history, we encourage genetic testing and counseling.”

BONE METS? YOU CAN EXERCISE If you are living with a diagnosis of bone metastasis, you may have been told to be careful to avoid falls but not about the importance of exercise. Although an exercise regimen that combines aerobic and resistance training has been proved to reduce cancerrelated fatigue, fall risk, anxiety and depression, people with advanced cancer are rarely given exercise guidance. A recent paper published in the Journal of Clinical Oncology shows that for people with bone metastases, regular exercise has the potential to maintain or improve physical function and health-related quality of life. It’s important to speak to your oncologist about your exercise goals to better understand the personal risks you may face. Ask whether your bone metastasis raises concerns about fractures, even if you work with a trained cancer rehabilitation or exercise professional. If you get the green light, ask for a referral. A few tips for a safe routine: Start working on your posture. Lift your chest, pull your shoulders back and gaze forward two to three feet. Start seated and then stand and finally walk. Work up to five-minute sessions. Full-body movements, such as chair marching, chair sit-to-stand exercises or countertop push-ups are more effective in strengthening muscles and joints than isolated ones, such as bicep curls. Focus on range of motion. You should be able to complete a body weight exercise without pain before you add any extra resistance via bands or dumbbells, for instance. Shorter 5- to 10-minute daily sessions will make you stronger faster than one or two longer weekly sessions. Most important, work with a cancer exercise professional to develop an exercise routine that works for you. —Sami Mansfield

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VOICES

BY LESLEY KAILANI GLENN

Breathing Lessons

Lesley Kailani Glenn, 56, lives in Oregon. She has Stage IV metastatic breast cancer.

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are treatment changes, scans every three to six months, the bills, the bone pain, the grief of losing fellow cancer friends, progression, the unknown, relationship changes. It is easy to hold your breath. I had to change, to be intentional, to breathe again, to be thoughtful about the experiences, adventures and moments that would fill up my life and lungs. I took up hiking to train my breathing to take me to magical places 14,000 feet above sea level. I sat by waterfalls and lakes with my hands on my belly to feel the rise and fall of Lesley my breath. Kailani I learned to meditate, Glenn which meant learning to focus on my breathing by counting as I inhaled and exhaled: 1, 2, 3, 4. I took time to laugh with my children, deep guttural laughter that either has you crying or coughing, catching your breath. I found my love for snorkeling again, listening to the rhythm of my breath as I swim with turtles. Then there are the benefits of learning how to breathe and be mindful. A breathing practice improves the immune system, helps get rid of stress hormones, reduces blood pressure and releases trauma.

Life can be hard; life with cancer is harder. But life without breath is an end, and I am just not quite ready to go yet. As the character Mr. Miyagi put it in the The Karate Kid Part II, “When you feel life out of focus, always return to basic of life. Breathing. No breathe, no life.” ■ Lesley Kailani Glenn is the CEO and founder of Project Life (ProjectLifeMBC.com), a free virtual wellness house for those living with metastatic breast cancer and their loved ones. It offers monthly breath work classes. For more first-person essays, go to: cancerhealth.com/stories

COURTESY OF LESLEY GLENN

NOT LONG AFTER MY CANCER diagnosis in November 2012, the automated voice coming from the CT scanner instructed me: Hold your breath. Then, 10 to 20 seconds later: Breathe. I realized at that point how natural it had become for me to hold my breath. I wondered how long I had been holding it because of, well, so many things. Cancer taught me to breathe. Again. I am a native Hawaiian, born and raised where the Indigenous have a special relationship with the land (Aina). I thrived in the ocean. I enjoyed diving through waves as they came to crash on the shoreline. Snorkeling was a favorite pastime, and I had to be mindful of my breath so that I could swim with the reef triggerfish, Hawaii’s state fish, which we call humuhumunukunukuapua’a. But at some point in my life, I forgot how to breathe. Was it adulthood, the stressors that come with life? Parenting, marriage, career, church, volunteer work, finances? The list could go on. When the voice in the machine told me to breathe, though, it was a wake-up call. Now every single breath would be the most important one I took. It’s not that easy learning to breathe again, especially living with an incurable disease. There

BY MARK HOFFMAN

VOICES

Patient, Know Thyself

COURTESY OF MARK HOFFMAN

Mark Hoffman, 57, who has chronic lymphocytic leukemia, learned how to ask a question that may have saved his life.

LIKE MANY PEOPLE, I HAVE struggled at times to find the correct path to take, to find the correct answer at the right time. When it came to my treatment of my chronic lymphocytic leukemia (CLL), I was fortunate to have found the option that may have saved my life. When I received my initial diagnosis, the local community hematologist/oncologist told me he puts every patient with this diagnosis on six months of watch-and-wait, followed by a standard combination of three chemotherapy drugs. If I continued down that path, I would not be where I am today. I owe a great deal to my doctors at the University of California at San Diego (UCSD), to the CLL Society—a patient-centered nonprofit that offers support and physician-curated content— and to my UCSD support group. Together, they educated me on the essential need to get my genetics tested before starting treatment. Indeed, “Test Before Treat” is the motto of the CLL Society! With this knowledge, I spoke up to my oncologist/hematologist, who was encouraging me to proceed with chemotherapy. Instead, I asked to have my cytogenetics—a kind of genetics that focuses on how chromosomes behave—checked first. His response was alarming: “Oh, For more first-person essays, go to: cancerhealth.com/stories

yeah, we forgot Mark Hoffman lives by the to do that.” motto “Test When my Before Treat.” genetics were finally analyzed, it turned out I was 17p deleted. This meant that the chemotherapy regimen could have been deadly to me. Many chemotherapy drugs, including those prescribed to me, work by activating the TP53 gene inside the 17p chromosome. That gene then kills the cancer cells. But in some people, including me, the 17p arm of the chromosome is missing. So the cancer cells would not die but instead continue on strong, while the rest of my body would still undergo the harsh effects of chemotherapy. Fortunately, due to my self-

advocacy, I avoided this fate. Fortunately, with the help of my support groups and cancer education, I have found a more favorable path. I was diagnosed in January 2016. With genetic testing, I also learned that my CLL cells were unmutated, which means they were particularly aggressive. I progressed quickly and needed treatment by the end of 2016. After much research and second and even third opinions, I found the CAPTIVATE trial, which is testing a combination of two targeted drugs, a BTK inhibitor and a BCL-2 blocker. These targeted therapy agents block key pathways that the CLL cells depend on to survive. I entered the trial in November 2016, but I didn’t start treatment until January 2017. In that time, my lymph nodes in my neck got very large. My cancer was progressing rapidly. The combination treatment appears to be working very well. After 15 months, I am at the point that CLL cells can no longer be detected in my blood, a state called undetectable minimal residual disease, aka remission. I have been in remission now for nearly four years! I have been able to live a very normal life. Learning to know yourself is important for everyone, but if you have cancer, knowing your genes can save your life. ■

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CancerHealth 11

DIARY

AS TOLD TO BOB BARNETT

A Multiple Myeloma Diary Kellie Smith, 52, lives in Austin with her husband and child. She has multiple myeloma.

August 2018 I was a stay-at-home mom, very active, taking my child, E., to school and to dance and classical guitar lessons. Gardening was one of my great joys. But I started having severe back pain, which would dissipate, then pop up elsewhere. My family doctor prescribed pain medications, steroids and muscle relaxers. Because of the pain, my life screeched to a halt. I couldn’t drive. I had to hold onto others to walk. I was so exhausted. November 2018 I experienced severe abdominal pain and constipation for nine days. My doctor sent me to the ER. CT scans revealed that I had a sigmoid volvulus—my colon was twisted shut—plus swollen lymph nodes, which could mean lymphoma, and a small mass in the pleural cavity next to my lungs. The GI doctors straightened out the volvulus and scheduled colon surgery to prevent recurrence but didn’t send me to an oncologist. My husband, Yaphet, and I made a telemedicine appointment with my integrative medicine doctor, who didn’t understand why the focus was on surgery when there was a suspicion of lymphoma. “If it was me,” she said, “I would get that looked at ﬁrst.” I canceled the surgery. That was the beginning of my cancer journey. My back pain was now so bad that I couldn’t sleep in a bed. I was conﬁned day and night to a recliner; it was horrible. When my MD saw the state I was in, she called an oncologist, who saw me within an hour, pulled my records and scheduled biopsies. That’s when I got scared. December 2018 The oncologist came back with the results—I had multiple myeloma (MM). I had never heard of it.

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We told E. that Left to right: Kellie Smith; in the hospital, night at dinner. I saw the with her family look of fear. “Are you going to be OK?” E. asked. I said, “We’re going to do everything we can to get good medical care. We want you to continue your activities, and we’ll work around this.” Yaphet became my advocate, researching and reaching out to MD Anderson Cancer Center in Houston. He found patient advocate Gary Petersen, who encouraged him to participate in Stand Up To Cancer’s PROMISE study for healthy individuals at higher risk of developing MM. Yaphet promised to do so. Since both African Americans and family members of MM patients have a higher incidence of the disease, if Yaphet had an MM precursor condition, then the risk for E. would have been even higher. We met my myeloma specialist at MD Anderson, who did lab work, bone X-rays, pulmonary and heart tests, an MRI and a PET scan. I was using a walker. I learned that I had two fractured vertebrae caused by the myeloma. I received pain medication and scheduled a kyphoplasty to repair the fractures with cement. It couldn’t come soon enough. Every bump in the road on those three-hour drives to and from Houston was excruciating. January 2019 I started treatment in preparation for an autologous [self-donated] stem cell transplant in six months. My Austin oncologist continued to treat me, coordinating with my MD Anderson specialist. For three out of four weeks, I got a combo of nonchemo treatments, including an IV immunomodulating drug. I experienced some taste changes and nausea but nothing too severe, although

transplant, a bone marrow biopsy showed that my myeloma was active again. It was so demoralizing. We had to start over. November 2019 I got a port and began a new 24-cycle regimen: a targeted antibody, an immunomodulating drug plus a steroid. Near the end of each cycle, my white blood cell count would fall; I got injections to boost my blood cell counts.

steroids really affected my sleep. On January 24, I got my kyphoplasty! Within ﬁve days, I was able to stand, sleep in bed and walk short distances unassisted. Waves of joy washed over me. February 2019 I started physical therapy sessions so my body would be as strong as possible. Our family started talk therapy to ensure we managed our emotions.

(PAPER) ISTOCK; (ALL OTHERS) COURTESY OF KELLIE SMITH

June 2019 We moved to Houston for the summer. There was a lot of prep work—a bone marrow biopsy, catheter insertion, heart and lung tests and imaging and, ﬁnally, injections for stem cell growth. I shaved my head proactively. I didn’t want to wake up one day and have a lot of hair on my pillow. July 2019 I was admitted to the hospital on July 2. I had two forms of chemotherapy over seven days. On July 9, the team reinfused my stored stem cells back into my body. The nurses were great, like coaches who want you to win. I was wiped out. Yaphet enrolled in the PROMISE study by submitting a blood sample for testing. We were overjoyed to learn that he didn’t have precursors of MM. I was released on July 22. I rested a lot. Yaphet and I took short evening walks inside our Houston apartment complex. In early August, I was cleared to move home. October 2019 It took me months to get out of that fatigue zone. I got worn down, took lots of naps. Although I had a very good partial response to the stem cell For more ﬁrst-person essays, go to: cancerhealth.com/stories

March 2020 With COVID-19 in full swing, we stayed very close to home. Fortunately, Yaphet works from home. September 2020 E. left for college—Harvard! Because of COVID-19 and my immunocompromised status, E. stayed on campus the whole year. We missed having E. home for the holidays, but we stayed in touch via Zoom. March 2021 I am officially in remission! I’ll be staying on my treatment plan for at least two years, then we can consider other options. September 2021 I received my first and second COVID-19 vaccine dose in February and March and got my booster dose this month. I was very tired the next day, so I attribute that to my body mounting a response. Fingers crossed! January 2022 I’m in a good place. That first year as a patient, my life revolved around appointments. Now, there are weeks when I don’t have to go to a doctor. I feel good about life. Like any cancer patient, though, the thought of “What if it comes back?” is always at the back of my mind. I take it day by day. Like water, I go with the flow. I have so much more gratitude in my life now. There are things I will never again take for granted, like walking up a flight of stairs or sleeping in a bed. I’m grateful for the physical things I can do and for all the hands and hearts that have touched my life.

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BASICS

BY LIZ HIGHLEYMAN

Bladder Cancer Treatment BLADDER CANCER—THE SIXTH most common cancer in the United States—can be difficult to diagnose early, making it hard to catch at a more treatable stage. But treatment has evolved in recent years, and survival rates are improving. (See “The Art of Living With Cancer,” page 16.) The most common type of bladder cancer is urothelial carcinoma (also known as transitional cell carcinoma), which originates in the lining of the

urinary tract. Urothelial cancer can also start in the lower part of the kidneys, the ureters (which connect the kidneys to the bladder) or the urethra (which excretes urine from the bladder). Noninvasive cancer is limited to the inner layer of the bladder, while invasive cancer has spread to deeper layers. Bladder cancer may not cause any symptoms in its early stages. If they do occur, symptoms may

include blood in the urine, a frequent urge to urinate, pain or burning upon urination, inability to urinate or pain in the lower back. Diagnosis involves urinalysis, examination of tissue biopsy samples and scans to look for tumors. Treatment Options Treatment for bladder cancer depends on the size and characteristics of tumors and whether the cancer has spread to other parts of the body. Many patients are eligible for surgery, which may involve removal of tumors or the entire bladder. In some cases, it is possible to create a “neobladder” using part of the intestine. Radiation therapy may be used with or without surgery. Traditional chemotherapy works by killing fast-growing cells, including cancer cells. It can also destroy healthy cells, leading to side effects. Platinumbased drugs are often used to treat urothelial carcinoma. For noninvasive cancer, drugs may be administered directly into the bladder via a catheter (intravesical therapy). Targeted therapies work against cancers with specific characteristics. For example, they may interfere with signaling pathways that regulate cell growth. Balversa (erdafitinib) is an oral drug approved to treat advanced urothelial carcinoma

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with specific genetic mutations. Immunotherapy helps the immune system fight cancer. Immune checkpoint inhibitors unleash T cells to kill cancer. Four checkpoint blockers are approved for urothelial cancer: Bavencio (avelumab), Keytruda (pembrolizumab), Opdivo (nivolumab) and Tecentriq (ateolizumab). An older type of immunotherapy uses BCG bacteria inserted into the bladder to attract immune cells. Antibody-drug conjugates (ADCs), a newer type of treatment, use targeted monoclonal antibodies to deliver chemotherapy drugs directly to tumors (see “Special Delivery,” page 20). Two ADCs, Padcev (enfortumab vedotin) and Trodelvy (sacituzumab govitecan), were recently approved for locally advanced or metastatic urothelial carcinoma. Systemic medications or radiation may be used to shrink tumors before surgery, kill residual cancer cells after surgery or relieve symptoms of cancer that can’t be removed. Combination therapy often yields better outcomes. Treatment can halt cancer progression, but targeted therapies and ADCs can stop working, and immunotherapy doesn’t work for everyone. Several new therapies are in development for bladder cancer. Ask your doctor whether a clinical trial might be a good option for you. ■ Learn more cancer basics: cancerhealth.com/basics

ISTOCK

Several new medications for urothelial carcinoma have been developed in recent years.

Bladder Cancer is One of the Most Common Cancers in America

Bladder cancer is among the most commonly diagnosed cancers in the United States, let one of the least known and understood. Yet in 2022, more than 81,000 people will be diagnosed with the disease and more than 17,000 will not survive it.

BCAN’s free-of-charge bladder cancer resources include information about: • Prevention • Diagnosis • Treatment • Survivorship • Caregiving • Clinical trials

The Bladder Cancer Advocacy Network (BCAN) is a community of patients, caregivers, survivors, advocates, medical and research professionals united in support of people touched by bladder cancer. Each year, we provide thousands of patients, caregivers and the medical community with the educational resources and support services they need to navigate their journeys. Additionally, since 2009, BCAN has funded more than $6 million in bladder cancer research.

To learn more about bladder cancer and the Bladder Cancer Advocacy Network, please visit bcan.org or call 1-888-901-2226.

Help us defeat bladder cancer by joining us in a 2022 Walk to End Bladder Cancer. Visit bcanwalk.org for details.

CAN536854.pgs 02.15.2022 15:41

ESA

Sculptor Shelley Kerr creates her own path to living well with cancer through making art.

While treatment keeps her Stage IV bladder cancer at bay, Shelley Kerr, 66, taps into her creativity, making sculpture and music. BY JENNIFER COOK

MYKA RAYMOND WITH CRAZY IDEA PHOTOGRAPHY

EVERY AUGUST, THE BENSON SCULPTURE GARDEN IN LOVELAND, Colorado, hosts the largest outdoor juried sculpture show in the country. The 2020 show was canceled due to COVID-19, so Fort Collins–based artist Shelley Kerr was excited to learn the show was on again in 2021. She was one of more than 160 national and international artists chosen to participate. Kerr had attended the exhibition in the past, but this was her first time showing her bronze sculptures, which take inspiration from Greek letters, a stellar constellation, the Trojan horse and her eight-year fight with urothelial carcinoma, which affects the lining of the urinary tract and is the most common type of bladder cancer. At the show, one family kept returning to view her sculptures, “and then they announced that they were going to buy the Nebra Sky Sisters”—a bronze sculpture inspired by the seven sisters of the Pleiades constellation—Kerr recalls. “There’s nothing about cancer in this piece—it’s just art. But I’m looking at this woman, and I said, ‘You know, I have to tell you, I’ve been fighting bladder cancer for eight years.’” Acting on instinct, Kerr shared her cancer journey. “She just looked at me, and she says, ‘I don’t know if I should tell you this, but my mother just died two weeks ago from cancer, and this piece is my healing.’ We both

just held each other and cried.” For Kerr, this story brings to mind the Greek word meta, which means higher or above. “The interaction went to a higher, unexpected level of connection—that I was able to produce something of beauty that helps someone else fight and deal with this disease,” she adds. RIDING THE BREAKTHROUGH WAVES As unlucky as it is to get bladder cancer when you don’t have any of the typical risk factors—being male, smoking, a family history of the disease, exposure to environmental toxins—she considers herself “super lucky” to have benefited from recent breakthroughs in treatment for the malignancy (see Basics: Bladder Cancer Treatment, page 14). Kerr was first diagnosed with urothelial cancer in 2014 when doctors found a tumor the size of a Ping-Pong ball in one of her kidneys, near her bladder. She subsequently underwent traditional treatments.

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“I was a little naive about how serious this was,” she admits. “I just thought, Well, let’s do what needs to be done. I have two kidneys; take it out.” Her left kidney was removed. Later, in 2014, she was treated with BCG (bacillus Calmette-Guérin), an immunotherapy used for early-stage bladder cancer. But in early 2015, Kerr was found to have Stage IV bladder cancer. She switched doctors and underwent a full course of chemotherapy, followed by surgery to remove the organ and create a neobladder using part of her intestines. Then, in the fall of 2015, her cancer came back a third time. Initially, her oncologist suggested another course of chemo to prolong her life. “I had just done two really tough chemotherapy treatments, and I thought, I know what that means. You may not use the word terminal, but I’m going to use the word terminal,” Kerr says. She and her husband, Dave, were driving from Minnesota, where they lived at the time, to visit family in Colorado for Thanksgiving. “We were in the middle of Nebraska on Interstate 80, and I’m thinking, Goodbye— this is my last holiday.” At a rest stop on the highway, she called her oncologist to set up her first chemo appointment, and he told her there was a change in plans: no chemo; instead, they would try immunotherapy. “I had no idea what the efficacy of the immunotherapy was going to be, but I felt differently about it,” she says. She started on a PD-1 checkpoint inhibitor, an immunotherapy drug that unleashes the brakes on the immune system so it can find and attack tumor cells. It was experimental for bladder cancer at the time, but her doctors convinced her insurance company to cover it. The drug proved to be a turning point. “The analogy that I use as I have moved from one treatment to another is that I’m body surfing,” Kerr says. “I’m

Shelley Kerr’s sculpture Nebra Sky Sisters

riding a wave until the wave dissipates. And then I run and get on another wave. I’ve done that three times now.” The latest treatment wave is an antibody-drug conjugate (ADC). Kerr’s oncologist, University of Colorado’s Thomas Flaig, MD, initiated ADC treatment in January 2020—it had been approved by the Food and Drug Administration a month earlier—to address cancer that remained in her lymph nodes after a course of radiation (see “Special Delivery,” page 20). Last September, Kerr developed pancreatitis (inflammation of the pancreas). Tests revealed that the urothelial cancer had spread to her pancreas, and she went back on the ADC. After three infusions, she no longer had symptoms, and her blood tests were normal. She’s not out of the woods, but she feels strong and good.

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WHAT DOES ART HAVE TO DO WITH CANCER? Ironically, it was cancer—though not her own—that spurred Kerr to take up sculpture again after a many-year hiatus. A high school art teacher had planted the initial seed, inspiring the teenage Kerr to create clay, metal and wax figures, including one she still has (“a reclining figure that reminds me of Rodin, if I could be so bold!”). But life led her on a different path, and she subsequently earned a degree in biology and held various jobs in real estate and other fields. Then, in 1989, her father died of lung cancer. As part of her grieving process, Kerr bought clay, intending to build a model of a pack of Camel cigarettes and then, cathartically, destroy it. She bought the clay but instead started sculpting other pieces, learning and advancing her art without any formal training. In 2018, in the middle of her own cancer ordeal, she

COURTESY OF SHELLEY KERR/JAFE PARSONS

I CHOOSE LIFE, EXPRESSION, JOY AND SHARING OVER DESPAIR.

found that art, life and cancer converged again. “This battle has driven me to a more creative state,” she wrote on her blog that December. “This is a precious time. I could have died two years ago, but I’m alive and feel healthy. I’m in high gear to express life and art…. I choose life, expression, joy, sharing—all forms of love—over despair.” Each project she tackles requires research and solving challenges. To thank her doctors after her immunotherapy treatments, for example, the first challenge was how to represent cancer in an art form. Since modern medicine has its roots in Greek culture, she asked her nephew, a Greek scholar, to “give me some words to play around with.” She settled on three letters—zeta, alpha and omega— which became To Live, a lyrical merging of the letters’ forms in bronze atop a sinuous column engraved with the Greek words for soul/life (ψυχη), art/skill/technology (τεχνη) and healer/physician (ψυχη). When Kerr’s doctor described her ADC treatment as a Trojan horse—an ingenious way to sneak a toxic drug inside cancer cells—she was inspired to sculpt a magnificent bronze version, based on images of Belgian draft horses. She described the piece, Breakthrough, as “a powerful horse spirit breaking through the armaments of the Trojan horse: the cart, the wood and the metal.” (To see a photograph of the sculpture, turn to page 20.) Kerr unveiled the piece at the September 2019 annual symposium of the Albert Institute for Bladder Cancer Research at the University of Kansas, which attracts national and international bladder cancer researchers and clinicians. She’s spoken at the symposium several times. “I’m like their poster child, because I’ve been through so much that I touch on their research pretty often,” she says. THE FOUR PILLARS Cancer continues to bring focus to Kerr’s art. “There is a piece that I intend to build called The Four Pillars,” she says. She and her husband came up with the concept. “When I was very sick, my husband and I would lie in bed at night and measure our day by the four pillars: Did I love? Did I give? Did I learn? And did I create? This piece has been floating around in my mind, but it wasn’t coming into physical form.” Over time, she realized that there was a fifth element, an orb that the four pillars support. She named it enthios, from the Greek work meaning “inspired.” Still, the piece wasn’t coalescing, and it certainly was not for want of trying.

Then, last fall, when cancer showed up in her pancreas, “this was serious for me because I never heard good things about pancreatic cancer,” she says. “It brought everything into focus again.” Although she still doesn’t know what The Four Pillars will look like, she says, “I think the idea is that you would be able to hold this round object and meditate on your day and life in joy with these aspects—Did I love, give, learn, create and live my life?— and then put it back on the stand. I had been tossing this around in my mind for months, and then with this recurrence of the cancer, it just went pshht! There it is. I know what it is now.” WAGING WAR, SEEKING PEACE Kerr’s presentation at the Albert Institute last fall was about how people discuss cancer. She conducted a search that uncovered the numerous battle metaphors used to speak about the disease. “You ‘win the fight’; you’ve got ‘killer’ cells,” she says, mentioning just two examples. “When I had radiation, the machine was called a linear accelerator, and that sounds like a weapon.” But there’s another aspect to dealing with cancer that involves acceptance and receptivity—to the experience, to allowing your body and medicines to take on the illness, to living with it. “There is harmony, journey, voyage, expedition, creativity,” Kerr says. “I determined that I experience both [sides]. There are times I pick up a weapon, and I’m like, ‘Let’s get this kidney out of here.’ And other times that I have the luxury of building this orb—that’s a complete creative process.” In addition to making sculptures, Kerr feeds her creative spirit by making music with her husband, an accomplished guitarist. She sings and plays keyboards and the accordion. They cover rock ’n’ roll and whatever else they like. “When we’re playing music, there’s nothing but the present moment,” she says. “It validates our love, the intensity of our being together.” As for the future, Kerr at first laughs. She and Dave recently acquired a beloved German bird dog named Rango. “We don’t know how long he’s going to live, hopefully 12 to 15 years. And I’m hoping to outlive the dog! “This thing could take me out at any point,” she adds. “You know, I do what I need to do. I will fight the fight. I think I’ll always be in that place to do what needs to be done. Because I like my life. And I’m not done. I am not done.” ■

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A new type of cancer treatment uses antibodies to deliver chemotherapy drugs directly to tumors. BY LIZ HIGHLEYMAN

MOST PEOPLE ARE FAMILIAR WITH

(BREAKTHROUGH) COURTESY OF SHELLEY KERR/JAFE PARSONS

chemotherapy and targeted therapy for cancer treatment, but a new type of therapy, known as antibody-drug conjugates (ADCs), incorporates the best features of both, combining the precision of monoclonal antibodies with the cancer-killing power of cytotoxic drugs. Several new ADCs have been approved by the Food and Drug Administration (FDA) in recent years after demonstrating good overall response rates—and in some cases improved survival—in clinical trials. Many more are now being evaluated in studies for people with breast, kidney, lung, ovarian, pancreatic, prostate and other cancers. “Antibody-drug conjugates are strategic tools in the targeted treatment of cancer,” says Richard Pazdur, MD, director of the FDA’s Oncology Center of Excellence. “These conjugates combine the ability of monoclonal antibodies to target specific receptors on cancer cells and then deliver a drug to the cancer cell.” Traditional chemotherapy works by killing or halting the multiplication of fast-growing cells. While chemo drugs can effectively kill cancer, they aren’t very discriminating. They also kill off rapidly multiplying healthy cells, such as those in the bone marrow and hair follicles, leading to a wide variety of side effects. Antibody-drug conjugates act like a Trojan horse, using monoclonal antibodies—manufactured versions of proteins the immune system produces to fight disease—to sneak potent drugs into tumors. ADCs are constructed using engineered antibodies designed to target specific antigens, or proteins on cells. Like targeted therapy, they home in on specific receptors or other markers that distinguish malignant cells from normal ones. A chemical linker is added to enable the antibodies to carry a payload of chemotherapy drugs (see illustration, page 22). In some ADCs, the antibody component has antitumor activity of its own, while Breakthrough, by Shelley Kerr (see in others it primarily serves as a “The Art of Living delivery vehicle for drugs. With Cancer,” The armed antibodies bind to page 16). ADCs act like a Trojan horse and are engulfed by cancer cells, to deliver potent where they release their deadly chemotherapy cargo. Because the payload is drugs directly to cancer cells. precisely delivered to cancer cells

while sparing normal cells, it’s possible to use more potent agents that would be too toxic on their own. Thus, the drugs work where they’re needed, minimizing collateral damage to healthy cells.

DEVELOPMENT OF ADCS The idea behind ADCs arose in the early 1900s, when Nobel laureate Paul Ehrlich— considered the father of chemotherapy—proposed that a “magic bullet” could target pathogens or cancer without harming the body as a whole. Early ADC clinical trials in the 1980s used mouse antibodies as a delivery vehicle, but these proved too toxic and not very effective. The first generation of ADCs based on chimeric (part mouse and part human) and humanized antibodies were developed in the 1990s, but they didn’t deliver a large enough payload. What’s more, early linkers used to attach drugs to antibodies were unstable and would sometimes prematurely release their toxic cargo into the bloodstream. Today, some of the newest ADCs use fully human antibodies, and more stable linkers hold on to their payload until they reach their destination. The nature of the payload has changed as well. Some of the early ADCs carried traditional chemotherapy drugs, but these did not work much better than cytotoxic drugs alone. So scientists turned to much more potent chemicals that were too toxic for systemic administration but could be safely delivered directly to cancer cells. ADC payloads include agents that damage a cell’s DNA, disrupt DNA replication or interfere with microtubules, tiny structures needed for cell division. The first approved ADC, Mylotarg (gemtuzumab ozogamicin), was granted accelerated approval in 2000 for acute myeloid leukemia. Two medications usually classified as radioimmunotherapy rather than ADCs, Bexxar (tositumomab with iodine 131) and Zevalin (ibritumomab tiuxetan with yttrium-90), approved in 2002 and 2003, use monoclonal antibodies to deliver radioactive isotopes that destroy cancer cells. In 2011—more than a decade after Mylotarg—the FDA approved Adcetris (brentuximab vedotin) for two types of lymphoma. It’s no coincidence that the first ADCs were used to treat blood cancers, such as leukemia and lymphoma, which are more easily accessible. But technological ad-

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side effects. And Enhertu, which carries a bigger and different payload, in turn works against cancer that has stopped responding to Kadcyla. In a Phase II trial, Enhertu yielded a remarkable 61% overall response rate for women with metastatic HER2-positive breast cancer who had received a median of six prior lines of therapy, including Herceptin and Kadcyla. HITTING THE RIGHT TARGET In addition to HER2, other ADC targets on solid The key to a successful ADC is its ability to hit the right target. Ideally, the targeted antigen or receptor would be tumors include the cell adhesion molecule nectin-4, reliably expressed on cancer cells but not on normal cells, which aids cell migration, and Trop-2, which plays a role allowing for precision drug delivery. Some blood cancers, in cell signaling. In a clinical trial of the nectin-4 ADC for example, have unique antigens—such as the CD22 Padcev (enfortumab vedotin), 44% of patients with metaand BCMA receptors on B cells—that make good static bladder cancer experienced tumor shrinkage despite having previously received multiple lines of therapy (see antibody targets. Two ADCs, Kadcyla (ado-trastuzumab emtansine) and “The Art of Living With Cancer,” page 16). Because these and other targets are found on multiple Enhertu (fam-trastuzumab deruxtecan), use trastuzumab (Herceptin and biosimilars), one of the first monoclonal types of cancer, ADCs have pancancer potential, meaning antibodies ever developed for cancer treatment, which they’re active against tumors with shared characteristics binds to the HER2 receptor on breast tumors and several at different locations in the body. For example, Trodelvy (sacituzumab govitecan), which targets Trop-2, is approved other types of cancer. ADCs can remain active against cancer that does not for both triple-negative breast cancer and bladder cancer. respond—or no longer responds—to treatment with Enhertu, which is approved for HER2-positive breast monoclonal antibodies alone, chemotherapy alone or and stomach cancer, also shows promise for non-small-cell both. Kadcyla works against breast cancer that no longer lung cancer and colorectal cancer. But the precision of ADCs can also be a disadvantage. responds to Herceptin and chemo, likely because it delivers more drug to tumors with fewer unacceptable Like targeted therapies, these medications recognize cancer cells with specific characteristics, so they don’t work against all malignancies. While around 20% of breast and stomach tumors are HER2 SPECIAL DELIVERY positive, the proportion drops to only about 2% Antibody-drug conjugates use monoclonal antibodies to deliver for lung cancer. And nectin-4, which is expressed a payload of chemotherapy drugs directly to cancer cells. on most bladder tumors, is less common on other tumor types. Genomic testing of a tumor THE ANTIBODY biopsy sample can help determine whether a particular patient’s cancer is likely to be susceptible to ADCs. vances have enabled the development of next-generation therapies that can better penetrate into solid tumors. There are now a dozen ADCs on the market, more than half of which were approved in the last three years (see “Approved ADCs,” page 23).

THE LINKER THE PAYLOAD

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FUTURE DIRECTIONS Despite their targeted nature, ADCs are not free of side effects, though these are generally more limited in scope compared with traditional chemotherapy. In some cases, the cytotoxic drug can leak out of cancer cells and harm neighboring cells. On the other hand, this “bystander effect” can enable ADCs to kill nearby tumor cells even if they do not themselves express the antibody’s target protein.

ANTIBODY-DRUG CONJUGATES ARE STRATEGIC TOOLS IN THE TARGETED TREATMENT OF CANCER. Side effects can also occur when normal cells express the same receptors as cancer cells (known as on-target/off-tumor toxicities). Antibody targets are chosen because they are preferentially expressed on cancer cells, but if even a small proportion of healthy cells also carry a receptor, this can lead to adverse effects. In addition, ADCs can stop working as cancer cells become resistant—for example, by reducing their expression of targeted receptors or expelling cytotoxic drugs from cells. As is often the case with cancer treatment, combining ADCs with other types of therapy may lead to better outcomes. For example, when ADCs kill cancer cells, the dying cells release chemical signals that can recruit cancer-fighting T cells to “cold” tumors that aren’t recognized by the immune system, which could help checkpoint inhibitor immunotherapy work better. Research is ongoing to discover new ADC targets on more types of tumors and in the surrounding tumor microenvironment. Scientists are also working on antibodies that can act as more efficient delivery vehicles as well as more stable linkers and more potent payloads. ADCs that use bispecific antibodies with dual antigen-binding sites and conjugates based on smaller antibody fragments or peptides that penetrate tumors more readily are currently in development. What’s more, ADCs have the potential to deliver targeted therapy and immunotherapy as well as chemotherapy drugs. “Antibody-drug conjugates are transforming the way cancers are treated given their specificity, stability, potency and potential to be paired with a variety of anticancer treatments,” says Roger Dansey, MD, chief medical officer of Seagen, a pioneer in ADC technology. “ADCs are becoming a cornerstone of blood cancer and solid tumor treatment and are improving outcomes for patients.” Dozens of experimental ADC candidates for numerous malignancies are now being evaluated in clinical trials. Talk to your care team about whether participating in a trial might be a good option for you. ■

APPROVED ADCS Adcetris (brentuximab vedotin) for classical Hodgkin lymphoma and anaplastic large-cell lymphoma Besponsa (inotuzumab ozogamicin) for B-cell precursor acute lymphoblastic leukemia Blenrep (belantamab mafodotin) for multiple myeloma Enhertu (fam-trastuzumab deruxtecan) for HER2-positive breast cancer and stomach cancer Kadcyla (ado-trastuzumab emtansine) for HER2-positive breast cancer Lumoxiti (moxetumomab pasudotox) for hairy cell leukemia Mylotarg (gemtuzumab ozogamicin) for acute myeloid leukemia Padcev (enfortumab vedotin) for urothelial (bladder) cancer Polivy (polatuzumab vedotin) for diffuse large B-cell lymphoma Tivdak (tisotumab vedotin) for cervical cancer Trodelvy (sacituzumab govitecan) for triple-negative breast cancer and urothelial cancer Zynlonta (loncastuximab tesirine) for large B-cell lymphoma

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LIFE WITH CANCER

BY DENA BATTLE

The Futility of Catastrophic Thinking

Dena Battle, a kidney cancer patient advocate, used to worry incessantly about cancer. Then, her husband was diagnosed.

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“It’s probably been there for 10 years,” explained the urologist. Was that a good thing? That it was there for 10 years? Or a bad thing? After all, wasn’t that my worst fear? That impending doom was lurking unseen, just around the corner? Waiting for the moment to catch us off guard and destroy our happy life? A TRUE CATASTROPHE Following surgery, the urologist assured us that my husband was “cured” and told us to “forget about cancer and focus on keeping that remaining kidney healthy!” His overconfident appraisal didn’t inspire confidence in us, Dena Battle and her late though. After all, husband, he was the same Chris Battle, doctor who just with their daughters two weeks earlier rushed my husband into surgery, telling us,“You can live with one kidney; cancer will kill you!” For the next few months, my anxiety went into overdrive. My catastrophic thinking shifted from fictionalized narratives to something more concrete, something known. After all, he did have cancer, and now, we were dealing with the question of whether his cancer would

BOTH IMAGES: COURTESY OF DENA BATTLE

I USED TO BE PLAGUED BY RANDOM PANIC ATTACKS. ”What if I get cancer?” or “What if my husband gets cancer?” Thoughts like this would pop into my head, triggered by something incidental—a mole I noticed on his arm, a twinge in my chest or something external, like a TV show or a Facebook post. Like a pulled thread, I would slowly unravel the yarn, tortuously imagining a new made-for-TV drama playing out the tragic story in sordid detail. I would preemptively mourn the loss of my husband, worry about our children growing up without a father, wonder how bills would be paid. The scenarios varied, but the commonality was always that it was something horrible and unexpected. Psychologists call this catastrophic thinking. For many people, it occurs following a traumatic experience. For me, it wasn’t tied to a particular event. Likely it was an odd mix of genetic predisposition (I’m not the only member of my family to experience this phenomenon) and personality He had just been given a clean characteristics (a tendency bill of health following a routine physical. Our primary care doctoward pessimism, a need for tor even praised him for having control). People who engage in lost five pounds (not that he catastrophic thinking often use needed to lose five pounds), it as a coping strategy to guard telling him, “When you hit 40, against being caught unprepared. it’s best to keep your weight Perhaps I was doing that too. down. Great job!” In 2009, my worst fear hapWeeks later, a suspected pened. At age 40, my husband appendicitis turned out to be a was diagnosed with cancer. It massive tumor on his kidney. was completely unexpected.

come back. I pored through the pathology report, googling every term I didn’t know. We both sought out algorithms and risk models trying to find our number. One well-intended doctor reminded us that for any one individual, the risk of recurrence is not 40% or 10%. It is just 0% or 100%. It either comes back or it doesn’t. He was right, of course, but hearing that didn’t reassure us. My fear became consuming. I would distract myself at work for a few hours, but inevitably, the haunting specter of cancer would return. I would find myself launching into a frenzy of circuitous searches, usually aimed at identifying signs or reasons that his cancer would come back. It might seem strange that I would try to confirm my worst fear, but what I really was seeking was certainty. But it is impossible to confirm something that doesn’t happen. These frenzied searches never left me feeling satisfied or confident. No matter what I found online or heard from other patients in support groups, my questions were never answered. Inevitably, doubts would arise again, and I would find myself repeating the same process. My incessant googling and needless searches did not prevent or change the outcome for my husband. Nine months after his surgery and three second opinions and one erroneous scan later, a CT scan showed small nodules in both of his lungs. For more first-person essays: cancerhealth.com/stories

REALITY LESSONS I do not regret becoming informed and empowered when it came to my husband’s diagnosis. We were right to question the ﬁrst urologist. We were right to get a second opinion. I am grateful that we educated ourselves about the treatment options available for advanced disease and that we weren’t forced to make a rushed decision about systemic therapy when the cancer recurred. But I do regret the time that I wasted practicing catastrophic thinking. All of those obsessive searches about his cancer recurring, all of those “practice runs” I played out in my head turned out not to be helpful at all. The reality of cancer was far different from the ﬁctionalized version in my brain. Absent from my narrative was the remarkable team of health care providers who were so determined to save my husband’s life. Doctors, nurses, even phlebotomists became members of our extended family. Disappointing scans that showed progressive cancer were interspersed with new treatments that offered unexpected hope. Neighbors rallied around us, dropping off food at our door, even planting a new tree in our yard when a beloved cherry tree died. People we had never met sent us care packages, emails and letters. Prayer chains circled the globe. Existing relationships strengthened and new unanticipated ones formed. My catastrophic narrative had

never bothered to Dena Battle include these moments—it was just a series of tragic vignettes repeating like TikTok videos. Real life was so much more complex, a rich tapestry where heartbreaking moments were interwoven with unexpected joy and compassion, where unspeakable loss exists only with enduring love. It has been eight years since my husband died. I am still prone to catastrophic thoughts. That hasn’t changed. But now, when something triggers this kind of thinking, I am less likely to pull at the thread. I realize the futility of the process. I remind myself that whatever narrative my brain might play out—a devastating radiology report, the plane crashing—it won’t be anything like the reality. And thinking those thoughts won’t do anything to prevent or prepare me for a catastrophe. Those thoughts achieve only one thing. They prevent me from really living. ■ Dena Battle is the cofounder and president of KCCure, a nonproﬁt dedicated to evidence-based, patient-driven advocacy for kidney cancer.

cancerhealth.com

SPRING 2022

CancerHealth 25

RESOURCES

BY TRENT STRAUBE

The LGBTQ Community CANCER MAY NOT DISCRIMINATE, BUT LGBTQ PEOPLE OFTEN FACE unique cancer risks and needs. These groups offer insight and assistance.

cancer.org

Most national cancer organizations include outreach to minority populations. The American Cancer Society, for example, offers a fact sheet for gay and bisexual men and another for lesbian and bisexual women; both outline barriers to care, prevalent cancers, prevention advice and more. The group’s Cancer Survivor Network (csn.cancer.org) includes two related discussion boards: Gay Men Talk About Cancer and Lesbians Talk About Cancer. CancerCare cancercare.org

Professional oncology social workers offer emotional and practical support for all people with cancer as well as their loved ones and care providers. The group occasionally offers LGBTQ-related support groups, and you can always read and download such booklets as “Cancer and Gender Diversity” and “Coping With Cancer as a Gay or Bisexual Man.” Cancer.net cancer.net

A patient portal run by the American Society of Clinical Oncology, Cancer.Net hosts a Resources for LGBTQ+ People With Cancer page with links to queer groups

(albeit not always about cancer), such as the National Coalition for LGBT Health and SAGE: Advocacy & Services for LGBT Elders. CoppaFeel! coppafeel.org

This U.K. breast cancer charity and Live Through This (see below) offer resources for nonbinary and transgender people— because everyone has breast tissue and can get breast cancer. National LGBT Cancer Network cancer-network.org

This organization is the LGBTQ community’s premier cancer resource. The nonprofit aims to educate queer people about their elevated cancer risks, to advocate for cancer survivors and to train health care providers to offer more culturally competent care. The website includes searchable databases of LGBTQfriendly providers that offer screenings and treatment; findings from the network’s national cancer survey; best practices for providers; a library with topics such as Bisexual Health, Caregiving and Cervical Cancer; and a webinar titled “LGBTQ+ Cancer Care: Welcoming Strategies.” Other standout offerings include: • LGBTQ cancer peer-support groups, including weekly

26 CancerHealth SPRING 2022 cancerhealth.com

meetings via Zoom and a list of other ways to find support, such as the Facebook group Lesbian Cancer Survivors and Caregivers; • Tobacco-Related Cancer Project, one of eight CDC-funded networks to reduce cancerrelated disparities in unique populations; • Out Proud Free, a program that addresses the prevalence of smoking, vaping and the use of e-cigarettes; and • TRANSforming Cancer, a roundup of resources, support and personal cancer stories for transgender people. National LGBT Cancer Project lgbtcancer.org

This site offers articles, advice, forums, first-person stories, info on clinical trials and more. Live Through This livethroughthis.co.uk

Based in London, this charity group’s website provides LGBTQspecific support, advocacy and information, including the podcast Queer With Cancer, canceraware recipes, the article “Sex With and Beyond Cancer,” a downloadable booklet “Provider Pack: Breaking Down Barriers to LGBTIQ+ Inclusive Cancer Care” and a YouTube video “LGBT+ Health and Screenings.” Discover more resources: cancerhealth.com/resources

ISTOCK

American Cancer Society

CHANGE IS POSSIBLE Fact: You have options when facing a lung cancer diagnosis. Learning all that you can about a diagnosis and what options are available can bring more than just hope. It can be the key to accessing treatments that help make long-term survival possible. Lung cancer clinical trials may be the right option for you or a loved one.

For more information on lung cancer and cancer clinical trials, visit

StandUpToCancer.org/LungCancer Fact: Lung cancer is the leading cause of cancer deaths in the United States.

Fact: Over 25,000 Black Americans were diagnosed with lung cancer in 2019 alone.

COMMON

Stand Up To Cancer Ambassador

Fact: New treatments are being discovered every day, and they may be available to you.

Photo By Matt Sayles

This Public Service Announcement was made possible by a charitable donation from Stand Up To Cancer is a division of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization.

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YOUR TEAM

BY ABBY SAJID

Breast Cancer Surgeon

Roshni Rao, MD, is chief of the breast surgery program at New York–Presbyterian/ Columbia University Irving Medical Center.

How can a patient vet a breast surgeon? Ideally, go to a breast center, which will have specialists who focus on breasts. If that’s not an option, look for a surgeon whose practice is at least 30% breast surgery–focused. Also, ask whether the surgeon is fellowship trained in breast surgery; it’s not the only factor, but it’s helpful to know.

How can patients choose the best surgical approach? Nationally, 60% to 70% of patients undergo breast-conserving surgery, also called lumpectomy, and 30% to 40% undergo mastectomy. Most surgeons will go over the risks and beneﬁts. In a lot of cases, mastectomy is just not necessary. There’s this thought that if you remove more, it should be better, but that’s typically not the case. What about reconstruction? If someone is having a mastectomy, we routinely recommend a visit with a plastic surgeon. Reconstruction is either implant based, with silicone or saline implants, or autologous, where a patient’s own fat and skin is used. We do occasionally have women who choose not to have reconstruction—more often older women, although I am now seeing more younger women choose this approach. What’s the best preparation? After a lumpectomy and sometimes even a mastectomy, you’ll need radiation, which requires putting your arm behind your head. So I recommend exercises to increase the range of motion of your shoulders. I tell patients undergoing mastectomy with reconstruction to Breast surgeon do a core strengthRoshni Rao, MD ening program

28 CancerHealth SPRING 2022 cancerhealth.com

because you don’t want to put a lot of pressure on your arms. You may not realize how much you push off with your arms when you get up off the couch or the bed. So start getting up without using your arms to push off. Also, arrange your home so you won’t do a lot of lifting postsurgery, and get button-down shirts [as opposed to pullovers] so you won’t need to lift your arms up. And ask what pain to expect and what the pain management plan is. We’re ﬁnding that fewer of our patients need narcotics, which is good. Do men get breast cancer? About 1% of breast cancer is in males, and it’s just as treatable, stage for stage, as breast cancer in females. It’s key to be aware that men do get breast cancer. If you feel a lump, get a workup. What inspires you? The research that is continuously ongoing. Since I’ve been practicing, I’ve seen so many changes. For example, we used to routinely remove all the lymph nodes underneath the arm, even if there was a small amount of cancer there. We no longer do that because we recognize it’s not necessary, and when we remove fewer nodes, there is less lymphedema, nerve pain and numbness and a better range of motion. ■ Who’s on your team? cancerhealth.com/team

COURTESY OF COLUMBIA UNIVERSITY MEDICAL CENTER

What’s the surgeon’s role in breast cancer treatment? Breast cancer treatment is a team effort that typically starts with the surgeon. In most places, the radiologist will hand off to a surgeon, who then thinks about the most appropriate ﬁrst step. That may be surgery, but sometimes, it may be chemotherapy, targeted immunotherapy or endocrine therapy.

FIND US AT

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• A daily resource for people living with and affected by cancer • Clear, comprehensive prevention and treatment information • News, personal stories, blogs, community forums and more • Sign up online to receive free treatment and lifestyle email newsletters Follow us on:

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GOOD STUFF

BY KATE FERGUSON

SPRING AT LAST!

Refresh and renew your mind and body for the upcoming season. Just in time for baseball season! When undergoing chemotherapy, some medications administered intravenously may require placement of a PICC (peripherally inserted central catheter) line. To keep the device secure at home or on the go, consider using a discreet MLB Branded PICC Line Cover ($35) emblazoned with your favorite baseball team’s logo.

Certain cancers and cancer treatments may trigger headaches. To help lessen the pain, wrap your noggin in a Headache Hat Wearable Ice Pack ($39.99). It’s constructed of soft, ﬂexible spandex and contains 24 reusable ice packets. Wrap it around your eyes and against your temples, wear it like a hat or use it to cool other body parts.

Keep friends and family up to date on your cancer journey with the CaringBridge app (free, Apple and Google Play). The nonproﬁt social sharing platform, founded in 1997, launched the mobile app for tablets and smartphones in 2018—and it keeps getting better. It’s a safe, secure place for patients and caregivers to post health updates and photos and for family and friends to send supportive messages.

Cancer treatment usually requires spending endless hours at the hospital, so watching TV and and listening to music can be a godsend. Upgrade your entertainment experience with these highquality wireless noise-canceling Bose QuietComfort 35 ($179) headphones, with a battery life of 20 hours. A voice-control feature allows you to seamlessly start and stop shows, songs and playlists.

Carolyn Garritt, a cancer rehabilitation trainer, was diagnosed with breast cancer while writing Get Your Oomph Back: A Guide to Exercise After a Cancer Diagnosis ($11.99, Kindle; $21.08, paperback). The book offers a wealth of practical information on exercising after a cancer diagnosis—before, during and after treatment—including how to work out to help manage side effects, maintain weight and bone strength and more. Garritt shares her personal experiences while demonstrating how to exercise wisely.

Find more products to make life easier: cancerhealth.com/good-stuff 30 CancerHealth SPRING 2022 cancerhealth.com

(HAND WITH PHONE) ISTOCK

Skin irritation is commonplace during cancer treatment. Chemotherapy drugs can cause redness, swelling and blistering on the palms of the hands and soles of the feet (handfoot syndrome), and radiation therapy can burn skin. The Lindi Skin Cooler Roll ($43.50 for a 4"x 60"–inch roll, which lasts about a month), a hydrogel dressing made of water infused with aloe and green tea, relieves discomfort. Wrap the material around inﬂamed and dry, sensitive skin for gentle relief.

IF YOU SMOKED,

GET SCANNED.

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SOLUTIONS

BY KAROLINA STARCZAK, RDN

Overcoming Malnutrition

WHAT IF ONE COMMONLY OVERLOOKED COMPONENT OF CANCER care could speed up recovery, improve treatment tolerance, reduce side effects, lower the risk of infection and decrease hospitalizations? That component is nutrition. When you have cancer, it can be difficult to maintain your nutritional status. Up to 80% of patients will become malnourished at some point in their cancer journey. Malnutrition is triggered by the complex interaction between reduced food intake, increased energy expenditure from metabolic changes, systemic inflammation, tumor growth and treatment. Simply put, the body burns fuel more rapidly but struggles to take in enough micro- and macronutrients, resulting in a deficit that, in turn, causes us to tap into our energy savings by breaking down fat and muscle. To make matters more challenging, it’s common for patients with cancer to need more calories to sustain their body weight and nutrition status than they did prior to their cancer diagnosis. It is estimated that 20% to 30% of deaths in patients with cancer are due to malnutrition and not the cancer itself. Luckily, there is an answer. Medical nutrition therapy provided by a registered dietitian has been shown to reduce the risk of malnutrition and improve outcomes during cancer treatment. Nutrition intervention may include dietary counseling, oral nutrition supplements and, if necessary, enteral nutrition (via a tube to the stomach) or parenteral nutrition (intravenous or via a port). These interventions improve weight, energy intake and quality of life. Yet access to nutrition care during cancer treatment is sparse. Over 75% of cancer centers do not have a registered dietitian on staff, and only about half monitor the nutrition status of patients with cancer. The focus during cancer treatment is shifted toward medical regimens, and it can be easy to forget the simple fact that our bodies need nourishment to survive. Cancer treatment can be overwhelming. Taking action to improve your nutrition can help ease the journey and may improve both your outcome and quality of life. ■ Karolina Starczak, RDN, is CEO of Nutrimedy Inc., an app that enables symptom tracking, meal logging and virtual appointments with dietitians to deliver personalized evidence-based clinical nutrition support to people with medical conditions, including cancer. Her coauthors on this article are Mallory Franklin PhD, RDN, LD, chief clinical officer; Cori Hooker, customer success manager; and Sarah Andrus MS, RDN, LD, a Nutrimedy dietitian.

32 CancerHealth SPRING 2022 cancerhealth.com

Nutrition Questions Here are some helpful questions about nutrition to ask your care team at your next visit. 1. Is there a registered dietitian on staff who can provide me with support and guidance? If not, is there one outside the center you could recommend who specializes in cancer? 2. During my treatment, how will we monitor and correct my nutrition status and/or unintentional weight loss? 3. How can I manage common treatment side effects, such as loss of appetite, dry mouth and diarrhea, that could make it more difficult for me to get adequate nutrition? 4. Should I implement any dietary restrictions or modifications during my treatment? 5. What are the warning signs of malnutrition?

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Medical nutrition therapy provided by a registered dietitian reduces the risk of malnutrition and improves outcomes during cancer treatment.

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Your opinion matters! Please take our survey and let Cancer Health know which topics are important to you. As a thank-you, we’ll choose five entries at random to receive a $25 prepaid Visa card.* How do you read Cancer Health? ❑ In print ❑ Online ❑ Both On a scale of 1 to 5, rate your interest in the following topics. (1 = not very interested, 5 = very interested): Advocacy and activism 1 2 3 4 5 Cancer basics 1 2 3 4 5 Caregiving 1 2 3 4 5 Complementary therapies 1 2 3 4 5 Emotional health 1 2 3 4 5 Family and relationships 1 2 3 4 5 Financial and work issues 1 2 3 4 5 Lifestyle news 1 2 3 4 5 Managing side effects 1 2 3 4 5 Nutrition and fitness 1 2 3 4 5 Personal stories 1 2 3 4 5 Prevention 1 2 3 4 5 Quality of life 1 2 3 4 5 Research advances 1 2 3 4 5 Resources 1 2 3 4 5 Survivor profiles 1 2 3 4 5 Treatment news 1 2 3 4 5

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For people with polycythemia vera (PV), uncontrolled blood counts can be concerning. Before another night passes, visit

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