A SMART+STRONG PUBLICATION CANCERHEALTH.COM WINTER 2021 $3.99
A LOVE STORY
How one couple stays strong A Psychologist’s Secret Weapon
Genomic Testing: Tumors Meet Their Match
Lung Cancer Advances New Ways to Ease Pain Metastatic Breast Cancer Diary Dann Wonser and Genevieve de Renne
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
Cancer Health.com Cancer Health Stories
Genevieve de Renne’s heart, says Dann Wonser, “is my greatest gift.”
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
Learn about the latest treatment advances and conference news. cancerhealth.com/treatment
COVER: JAY FRAM; (WONSER AND DE RENNE) COURTESY OF DANN WONSER; (HEART SPEECH BUBBLE, IV TREATMENT, TYPEWRITER) ISTOCK
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.
14 LOVE IN A TIME OF CANCER Blogger and author Dann Wonser credits his 14-year survival with lung cancer to his wife, Genevieve de Renne. BY KATE FERGUSON 18 MEETING YOUR MATCH Genomic testing can customize treatment to target tumors. But will this powerful tool become affordable? BY LIZ HIGHLEYMAN 22 RADICAL ACCEPTANCE Psychologist Seth Axelrod, PhD, has metastatic bone cancer—and a unique set of tools that help him live with it. BY JENNIFER L. COOK 2 From the Editor Quality of Life 4 Care & Treatment Promising KRAS drugs | high intensity ultrasound treats prostate cancer | COVID-19 risk during chemotherapy | cervical cancer advances | new FDA approvals
10 Diary Jamil Rivers supports people with metastatic breast cancer like herself. 26 Your Team New ways to manage cancer pain 28 How To Support your partner.
6 News The credit score trap | OUT: The LGBTQ Cancer Survey | new colon cancer screening guidelines | the diabetes connection
29 Resources Find survivors who can lift you up.
8 Voices How Adam Hayden found himself
32 Life With Cancer Shelley Kerr is a warrior artist.
9 Basics Lung cancer treatment
33 Reader Survey Tell us about your quality of life.
30 Good Stuff Cozy food, clothing and a book
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FROM THE EDITOR
Cancer Health TM
IN THE CANCER community, quality of life is an important measure, a gauge of one’s ability not just to survive but to thrive. The ways people respond to sometimes overwhelming challenges are complex and, often, awesome. Dann Wonser and Genevieve de Renne started a romance dancing all night at a friend’s wedding, but it was their enduring love that sustained them through Dann’s journey with lung cancer over the past 14 years (“Love in a Time of Cancer,” page 14). Yale University School of Medicine’s Seth Axelrod, PhD, an expert in a therapy that helps people experiencing deep emotional distress, learned to apply his skills on himself after he was diagnosed with bone cancer (“Radical Acceptance,” page 22). Cancer researchers are responding to the challenges of a wily foe in awesome ways as well. Genomic testing, which seeks tumor-specific vulnerabilities, is rapidly expanding the potential of drugs to target many more cancers (“Meeting Your Match,” page 18). Scientific advances are also improving outcomes in lung cancer (Basics, page 9) and pain management (Your Team, page 26). For more advances, see Care and Treatment, page 4, and News, page 6. Blogger Adam Hayden, who has brain cancer, writes about walking his dog, doing the dishes and facing mortality in “Finding Myself in Illness,” page 8. Jamil Rivers, who has
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breast cancer, describes her journey as a Black woman to understand the disease and become an advocate in “A Metastatic Breast Cancer Diary,” page 10. Sculptor Shelley Kerr, who has bladder cancer, found new inspiration in her own miraculous treatment (“Warrior Artist,” page 32). In these pages, you’ll also find tips for couples (How To, page 28), sources for emotional support (Resources, page 29) and soothing seasonal comforts (Good Stuff, page 30). How is your own quality of life? Please let us know by filling out the Reader Survey on 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 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
BOB BARNETT Editor-in-Chief bobb@cancerhealth.com Twitter: @BobCancerHealth
Cancer Health (ISSN 2688-6200) Issue No. 12. Copyright © 2021 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.
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Quality of Life
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 Dena Battle; Jamie Ennis Boyd; Timothy Henrich, MD; Carl June, MD; Gaby Kressly; 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
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CARE & TREATMENT
BY LIZ HIGHLEYMAN
Promising KRAS Drugs After three decades of unsuccessful attempts, researchers are finally cracking the KRAS code, with two experimental KRAS inhibitors moving into late-stage clinical trials. The KRAS gene makes proteins involved in signaling pathways that regulate cell growth; mutations allow cancer cells to grow out of control. Once considered “undruggable,” KRAS is the most commonly altered gene in people with cancer. Sotorasib (formerly AMG 510) targets a specific mutation, known as KRAS G12C, found in about 14% of non-small-cell lung cancer (NSCLC) and a smaller proportion of other solid tumors. In the Phase I/II CodeBreaK 100 study, sotorasib led to tumor
shrinkage in 32% of patients with advanced NSCLC. Another 56% had stable disease, for a combined disease control rate of 88%. Among people with colorectal cancer, 7% were responders, and 67% had stable disease, for a disease control rate of 74%. Four of the 28 people with other types of cancer (14%) had a partial response, and the disease control rate was 75%. Adagrasib (formerly MRTX849), which targets the same mutation, likewise demonstrated good results in the Phase I/II KRYSTAL-1 trial. In an analysis of 51 people with advanced NSCLC, 45% had a partial response, and all but two of the rest had stable disease, for a disease control rate of
96%. Of the 18 treated patients with colorectal cancer, three (17%) had a partial response, and the disease control rate was 94%. Among the six people with other advanced solid tumors, four had partial remission, and two had stable disease. “It’s an inspiring and exciting time in the oncology field to see potential targeted therapeutic options for patients with the KRAS G12C mutation, a patient population that has historically faced limited treatment options,” says KRYSTAL-1 investigator Pasi Jänne, MD, PhD, of Dana-Farber Cancer Institute in Boston.
HIFU FOR PROSTATE CANCER A minimally invasive technique known as hemigland high intensity focused ultrasound ablation (HIFU) is as safe and effective as commonly administered treatments for prostate cancer, such as surgery or radiation, which can lead to urinary incontinence and erectile dysfunction. Done as an outpatient procedure, HIFU ablation involves using ultrasound to selectively destroy cancerous prostate tissue. In a study of 100 men treated with this approach, 91% did not need to seek more radical treatment following HIFU, and 76% did not experience cancer recurrence. While some did have minor urinary issues, none developed incontinence. Overall, the treatment was safe and helped the men maintain their quality of life. “This positive data empowers urologists to use focal HIFU ablation to effectively address prostate cancer without the intrinsic side effects of radical treatments,” says lead study author Andre Luis Abreu, MD, of the University of Southern California in Los Angeles.
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Now Approved Here are the latest new cancer drugs approved by the Food and Drug Administration: • Gavreto (pralsetinib) for RET+ non-small-cell lung cancer • Onureg (azacitidine) for acute myeloid leukemia
COVID-19 AND CANCER TREATMENT People with cancer and their doctors have been concerned that cancer treatment, especially chemotherapy, could raise the risk of more severe COVID-19. But recent research helps allay such fears. One study reviewed outcomes among 309 patients with cancer and COVID-19 treated at Memorial Sloan Kettering Cancer Center in New York City. During follow-up, 48% were hospitalized, and 10% died. As seen in other studies, people with blood cancers and lung cancer fared worse than those with other malignancies. People in remission appeared to have better outcomes than those with active disease. Receiving chemotherapy within the three months prior to a COVID-19 diagnosis was not associated with a higher likelihood of intensive care admission or death. Whether immunotherapy affects COVID-19 outcomes is less clear, as study results are mixed. Some severe complications of COVID-19 are due to an overactive immune response. Checkpoint inhibitors that boost T-cell activity could potentially
help the body fight the coronavirus—or they could make matters worse. Another team at Memorial Sloan Kettering analyzed data from 423 cancer patients diagnosed with symptomatic COVID-19; 40% were hospitalized, 20% were admitted to intensive care and 12% died. Treatment with checkpoint inhibitors was associated with about a threefold higher likelihood of hospitalization and severe disease, largely driven by people with lung cancer. Other studies, however, have not seen such a link. Again, receiving chemotherapy within the past month was not associated with worse outcomes, nor was cancer surgery. “If you’re an oncologist and you’re trying to figure out whether to give patients chemotherapy or if you’re a patient who needs treatment, these findings should be very reassuring,” says study coauthor Ying Taur, MD, MPH.
ALL IMAGES: ISTOCK
CERVICAL CANCER ADVANCES Two experimental checkpoint inhibitors and an antibody-drug conjugate showed promising activity in people with relapsed or metastatic cervical cancer, researchers reported at the ESMO Virtual Congress 2020. Balstilimab is a new PD-1 checkpoint blocker that restores T-cell activity against tumors. Zalifrelimab is an experimental CTLA-4 blocker that promotes T-cell multiplication. In two mid-stage trials with more than 300 participants, balstilimab alone demonstrated an overall response rate of 14%, while the combo shrank tumors in 22%. “Advances in these agents offer renewed hope for patients For more care and treatment news: cancerhealth.com/treatment
who have limited treatment options,” says David O’Malley, MD, of the Ohio State University Comprehensive Cancer Center in Columbus. “This is especially important because this disease disproportionately affects younger women.” Another Phase II study tested tisotumab vedotin, which uses a
monoclonal antibody to deliver a potent chemotherapy drug directly to cancer cells. Among 101 people with advanced cervical cancer, the overall response rate was 24%, including seven with complete remission. The median overall survival time was 12.1 months. Although these results are promising, it is best to prevent cervical cancer in the first place. Caused by the human papillomavirus (HPV), this malignancy can be prevented with a vaccine. A recent study in Sweden showed that the risk of cervical cancer among women vaccinated before age 17 dropped by nearly 90%.
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NEWS
BY BOB BARNETT
Out: The LGBTQ Cancer Survey
CREDIT SCORE TRAPS When you are diagnosed with cancer, your first thought isn’t likely to be how it will affect your ability to buy a car, get a mortgage, rent an apartment or take out a loan. But by damaging your credit score, it can do all that. “Your credit score is cumulative and follows you over time,” says Lorraine T. Dean, ScD, an assistant professor of epidemiology at Johns Hopkins Bloomberg School of Public Health in Baltimore, who recently participated in Imagine Cancer Equity, an event organized by the nonprofit Family Reach. Financial hardship caused by cancer falls heaviest on people of color, people with lower incomes or lower education levels, and people ages 19 to 39. The impact can be long term. In her research on women with a history of breast cancer—on average, 11.5 years after diagnosis—Dean found that 24% reported poor credit, which was linked with an inability to pay for health needs. Those with better credit reported better physical health and less psychosocial stress. Dean would like to see cancer institutions use credit scores to help identify those in need. Educating people about financial options reduces stress and anxiety, but to really tackle the issue, she says, the cost of cancer treatment needs to come down. “It’s not a matter of individual agency—the system needs to be fixed.” For people with cancer, her advice is to “keep an eye on your ability to pay bills, and talk to a hospital social worker sooner rather than later. Don’t let your credit score lapse— there is so much help available to you.”
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“We have a history of our health care providers not respecting who we are,” says Scout, MA, PhD, executive director of the National LGBT Cancer Network. The combination of ignorance and an unwelcoming attitude can lead to negative outcomes for LGBTQ people with cancer, who have lower rates of screening; higher rates of risk factors, such as smoking; and higher rates of certain cancers. “A trans guy still needs breast cancer screening because even with top surgery, they may still have some breast tissue,” explains Scout, a trans father of three, who goes by one name. Another example: Rates of anal cancer, primarily caused by HPV, are rising rapidly in the United States. Men who have sex with men, especially those living with HIV, are at higher risk for anal cancer, but many providers may not be aware that men can undergo anal Pap smears to catch cancer early. Scout’s pleas to providers: “Learn about the additional risks in our population so that we don’t have to educate you. And show that your office or hospital is welcoming—don’t presume we realize you are because you’re thinking it quietly in your head.” To help train providers to make care safer and more welcoming, the network launched OUT: The National Cancer Survey. To take it, aim your phone’s camera at the QR code (right) and follow the prompts. To find an LGBTQfriendly provider, go to CancerNetwork.org.
CATCHING COLORECTAL CANCER Chadwick Boseman was a masterful actor. He captured the essence of Jackie Robinson, James Brown and Thurgood Marshall and brought to life the transcendent fictional King T’Challa in Black Panther. Tragically, Boseman, who died at age 43 after a four-year battle with colorectal cancer, also represented the increased risk the disease poses for Black people and those under age 50. African Americans are about 20% more likely to develop colorectal cancer and about 40% more likely to die from it. According to the American Cancer Society (ACS), “They often experience greater obstacles to cancer prevention, detection, treatment and survival, including systemic racial disparities that are complex and go
beyond the obvious connection to cancer.” Colorectal cancer has been rising in younger people regardless of background. To improve diagnosis, in 2018, the ACS changed the recommended age for a first colorectal screening from 50 to 45. In October 2020, the U.S. Preventive Services Task Force similarly advised reducing the age threshold to 45. If finalized, the new recommendation will be particularly significant because Medicare and private insurance would be required to cover it with no co-pay or out-of-pocket costs. The task force did not specify screening methods but noted that both stool blood tests and direct examination (e.g., colonoscopy) reduce mortality.
(CREDIT SCORE AND HAND/METER) ISTOCK; (QR CODE) COURTESY OF THE NATIONAL LGBT CANCER NETWORK; (BOSEMAN) FEATUREFLASH/SHUTTERSTOCK.COM
THE DIABETES CONNECTION “Cancer and diabetes are two sides of the same coin,” says Debbie Thurmond, PhD, director of the Diabetes and Metabolism Research Institute at City of Hope, a Southern California– based research and treatment center for cancer, diabetes and other diseases. “They are disruptions of the body’s normal metabolism.” People with type 2 diabetes are twice as likely to develop liver or pancreatic cancer and are at increased risk for colon, bladder and breast cancer. But the connection has particular implications for people with diabetes in treatment for cancer. Certain checkpoint inhibitor immunotherapies, which unleash the body’s T cells to attack tumors, can, in certain Get more cancer news: cancerhealth.com/news
cases, trigger an immune attack on the insulin-producing beta cells in the pancreas. “These individuals suffer from very high blood sugar, and they need a lot of insulin rapidly,” says Thurmond. “Other therapies, such as corticosteroids, often used to manage treatment side effects, may impair blood sugar control in patients with no prior history of diabetes and can worsen preexisting diabetes.” These possible side effects are no reason to avoid treatment—immunotherapy is often lifesaving, and diabetes can be treated—but they do highlight the importance of good team care. For people with diabetes, “the initial consultation should be with an oncologist and then
with an endocrinologist, who can work together as a team,” says Thurmond. “Then you can optimize treatment.” In 2020, City of Hope opened a new department to study these interconnections, which go both ways. Newer diabetes therapies aim to regenerate beta cells to produce insulin again, for example, “but the moment you increase the proliferation of cells in the body, it raises red flags in the cancer community,” she says. “The ultimate goal is to develop treatments that target cancer without causing diabetes and vice versa.”
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VOICES
BY ADAM HAYDEN
Finding Myself in Illness I’M GOING TO DIE. Well, each of us is going to die. Death and taxes and all, but I don’t mean it in the New Age spiritual awakening “You know, we’re, like, totally all dying, man” way. I mean what my radiation oncologist meant when he shook my hand, smiled at my wife, Whitney, and asked plainly, “You do know you’re going to die from this, don’t you?” I was 34 years old. I had no major medical history. Surgeons removed a tumor from my brain the diameter of a baseball. A week and a half later, my oncologist told us that the tumor was a deadly brain cancer called glioblastoma, and our unremarkable lives as recent suburbanites and parents to young kids became anything but. An awake brain surgery— followed by inpatient rehab to relearn to walk and feed and bathe myself—were the first obstacles. Radiation and chemo were the next hurdles. Now, the chronic stress of living with a tough diagnosis is a daily reality. Despite this, watching our three young kids (9, 7 and 5) blossom into their own people brings joy. There is a general notion that serious illness, life-threatening illness, liberates a person from daily concerns and leaves you to tick off the boxes on a bucket list. But that isn’t quite right.
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The reality of serious illness is that everything about life changes, and also, absolutely nothing changes. Life is flipped on its head, sure, but the dishes. So many dishes. And the laundry. You need to let out the dog and sign for the package. I was facing the existential distress of a deadly brain cancer; a seizure could strike at any moment; I was off balance because the aggressive brain surgery left me weak on the left side of my body. But the bills need to be paid, and it is good to vacuum. Still, it isn’t all minutiae. I found wisdom in illness. Like my friend Chad said to me over coffee during a conversation that may have been too serious for Starbucks, “Jeez, man, you sound like you’re going through a midlife crisis!” And that’s as good a definition as any for young adults diagnosed with cancer: a midlife crisis. While there is no welldefined cultural analogue for terminally ill young adults, the midlife crisis phenomenon, with its concern for legacy, goals,
success and Adam Hayden with his wife existential disand their boys tress, isn’t bad. That is why my experience is both unique and generalizable. Between sips of coffee, Chad went on to suggest that my life is “compressed.” If you can imagine a compressed life—Caution: Contents under pressure!—you’ll begin to grasp what I have learned. Our compressed lives offer something to share with others. Academics call it “existential maturity” or “posttraumatic growth.” Another term for it? Old-fashioned grit. We dying folk have it. I’ve always felt comfortable as a public speaker, a storyteller in search of a story. Now I’ve found it. In illness, I have found myself. ■ For more first-person essays: cancerhealth.com/stories
COURTESY OF ADAM HAYDEN/ADAM RAMSEY FILM
Cancer Health blogger Adam Hayden, 38, a philosopher and palliative care advocate, lives in Indianapolis with his wife and three sons. He has glioblastoma.
BY LIZ HIGHLEYMAN
BASICS
Lung Cancer Treatment
New targeted therapies and immunotherapies can lead to better treatment outcomes.
ISTOCK
LUNG CANCER IS THE SECOND most common type of cancer in the United States, and it remains the leading cause of cancer mortality, exceeding deaths from breast, colon and prostate cancer combined. Lung cancer treatment has improved over the past decade thanks to new targeted therapies and immunotherapies. A study by the National Cancer Institute found that deaths from nonsmall-cell lung cancer (NSCLC) have decreased even faster than the decline in new cases attributable to reduced smoking. Despite these improvements, lung cancer is often diagnosed late and remains difficult to treat. Lung cancer screening, recommended for heavy smokers, can detect cancer at an earlier stage, but only around 2% of eligible individuals have been screened. Up to 20% of people with lung cancer never smoked. TREATMENT OPTIONS Lung cancer treatment depends on the subtype, how advanced it is and whether it has spread beyond the lungs (metastasis). NSCLC accounts for about 80% of lung cancers. The main subtypes are adenocarcinoma, squamous cell carcinoma and large cell carcinomas. Small-cell lung cancer is harder to treat. Some localized lung tumors can be surgically removed. Radiation therapy may shrink To learn more about lung cancer: cancerhealth/lungcancer
tumors that can’t be removed— which can relieve symptoms— or kill cancer cells that remain after surgery. Traditional chemotherapy kills fast-growing cells, including cancer cells. It may be used before surgery (neoadjuvant chemo), after surgery (adjuvant chemo) or to treat cancer that can’t be surgically removed or has spread. Targeted therapies are more precise, working against cancer with specific characteristics. Many of these are tyrosine kinase inhibitors that interfere with proteins that play a role in cell growth. Many NSCLC tumors, especially adenocarcinomas, have driver mutations that trigger cancer growth. The distribution of these genomic alterations varies across population groups and differs between smokers and nonsmokers. The Food and Drug Administration has approved medications that target seven mutations: ALK, BRAF, EGFR, MET, NTRK, RET and ROS1. Some of these are rare, occurring in only 1% to 2% of lung cancers. Drugs that target KRAS mutations are now in clinical trials—an exciting development because this mutation is much more common in lung adenocarcinomas. Ask your doctor about genomic testing to see whether your cancer has targetable mutations. (See
“Meeting Your Match,” page 18.) Immunotherapy helps the immune system fight cancer. Some tumors turn off immune responses against them; checkpoint inhibitors release the brakes and restore T-cell activity. Five checkpoint inhibitors are approved for lung cancer. Targeted therapy and immunotherapy can lead to higher response rates and longer survival. But kinase inhibitors may stop working as cancer cells develop resistance. Immunotherapy doesn’t work for everyone, and it is hard to predict who will benefit. Combining medications can improve response but may result in more side effects and higher cost. Many experimental therapies— including drugs targeting new mutations—are in development. Clinical trials can be a good way to get early access to promising treatments. Ask your care team whether a trial might be an option for you. ■
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DIARY
AS TOLD TO KATE FERGUSON
A Metastatic Breast Cancer Diary Jamil Rivers, 42, is the board president of METAvivor, a nonprofit breast cancer organization. She was diagnosed with metastatic breast cancer at age 39.
March 2018 I was given a mammogram plus a liver biopsy. I had Stage IV metastatic breast cancer. The results confirmed hormone-positive breast cancer with tumor cells that had spread to the liver. I told my mom, my dad, my husband and my sisters but took a little bit more time to tell my three kids. I did not disclose it to anyone at my job at a nonprofit educational organization, where I just started five months prior. I did my research and found the National Comprehensive Cancer Network’s clinical practice guidelines. The doctor at my cancer center in Philadelphia presented his recommendations to me, but I also got a second opinion. I learned everything I could about cancer and Black women. I wanted to see which treatments had the best outcome as far as survival and a durable response. I weighed all the information and decided to go with my cancer center’s treatment plan. April 2018 I began chemotherapy. I was in a lot of pain that seemed to get progressively worse. I experienced hot flashes and had gastrointestinal issues, skin irritation and rashes. One time, I was lying down
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on the couch and my kids were Researching her own breast looking at me with real concern cancer drove and fear. But there were light Jamil Rivers into moments too. One day, my son advocacy. said to me, “I know you’re wearing a wig, Mommy, and I’m not going to leave the room until you show me your bald head.” May 2018 Luckily, I did not have nausea or diarrhea, so I continued to work. I took nutritional supplements and looked into integrative therapies, like acupuncture and massage. These treatments helped to reduce pain, constipation, skin irritation and hot flashes. July 2018 I decided to go through Living Beyond Breast Cancer’s advocate training program. I saw a dearth of information addressing Black women and the unique challenges we face. September 2018 Slowly, I got through chemo and finished those treatments. I had pictures of scans in my phone when 60% of my liver was taken over by tumors. Now, I could see all the tumors shrinking. October 2018 I had surgery to have my ovaries removed to suppress estrogen in my body. I remember being nauseous and out of it. My husband literally had to carry me out of the hospital. January 2019 Since this month started, I’ve been clear: no new
COURTESY OF JAMIL RIVERS
February 2018 I got a cold in December that refused to go away, so I went to the doctor in January. This month, I felt a little pinch in my side, which lasted a couple of weeks, so back to the doctor I went. I requested a chest X-ray and an ultrasound to see why I was still coughing. The ultrasound showed lesions in my liver.
tumors, no new progression, no recurrence. I did [Susan G.] Komen’s “In My Own Voice,” an event that educates people about advances in scientific research and clinical treatment specific to metastatic breast cancer. It engages individuals in conversations about their unique needs, barriers they face and possible solutions to improve racial and ethnic breast cancer outcomes. March 2019 Chemotherapy ended, and I launched a mentoring program for women with metastatic breast cancer. Initially, it started with other women coming into my chemo room and asking how I was doing. The program grew to about 50 women. I also started working with the American Cancer Society and Komen and got an idea for my own nonprofit, the Chrysalis Initiative. Its goals are to help AfricanAmerican women assess their breast cancer risk, provide mentoring and resource navigation to women with breast cancer, and offer education to providers.
COURTESY OF JAMIL RIVERS
April 2019 People magazine found out about my story and featured me. Then, my whole family and I went on Good Morning America (GMA). That’s when people at my job found out I had breast cancer. They were totally shocked. May 2019 I went to Capitol Hill with Komen and met with Congress about different legislation that needs to pass so breast cancer patients can get better support and more money for metastatic breast cancer research. In addition, I participated in the design of a clinical trial to address disparities, such as the low participation of patients of color. I became involved as a science advocate and got to see all the difficulties scientists think about when they’re preparing to kick off a new project. My husband and I attended a retreat for metastatic breast cancer patients given by METAvivor, a national nonprofit organization dedicated to funding research for Stage IV metastatic breast cancer. I was already familiar with the organization; I had supported them and donated to them. For more first-person stories: cancerhealth.com/stories
July 2019 I did the Project LEAD training offered by the National Breast Cancer Coalition. Project LEAD is a science training program for breast cancer activists.
Rivers with her husband, sons and GMA’s Robin Roberts
September 2019 I joined the board of METAvivor and became their treasurer. METAvivor is the only U.S. organization dedicated to funding annual Stage IV breast cancer research. They speak out about the lack of research for this type of cancer. July 2020 I was just announced as METAvivor’s first Black board president! In this new role, I plan to contribute to the organization’s mission of transitioning metastatic breast cancer from a terminal illness to a chronic, manageable disease. October 2020 I’m now on an aromatase inhibitor (which suppresses estrogen) and a CDK4/6 inhibitor, a targeted therapy that disrupts the cell division process that breast cancer cells must undergo when they start spreading through the body. For this type of treatment, the standard progression-free survival is about 28 months, which I’m approaching in January 2021. Also, last month, the Chrysalis Initiative became a formal nonprofit. Every day, I’m on guard and waiting for the other shoe to drop. But I’m hoping that with all the new treatments and more money going into research, I can be one of those people who can live with this disease for a long time. I want to see my kids grow up so I can meet my grandkids.
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IN A TIME OF Cancer Health blogger Dann Wonser says the key to his 14-year survival with non-small-cell lung cancer is his wife, Genevieve de Renne.
CALL IT KISMET. WHEN DANN WONSER AND Genevieve de Renne met in 1991, they were both working in the field of mental health at different hospitals in the Providence Health services system in Portland, Oregon. Dann was a mental health counselor, while Genevieve was an occupational therapist. When a mutual colleague first introduced them, they were both married to other people but kept bumping into each other while attending workrelated events. A few years later, both divorced, they wound up at a wedding for two coworkers. This time around, they surrendered to the undeniable attraction between them, and the two danced all evening. Initially, their age difference—Dann is 63, and Genevieve is 71—caused Dann to agonize about asking her out. But Genevieve made the first move and invited him to join her on a walking tour of art galleries around town.
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After dating for a little over a year and then living together, they got married in 1996. The two don’t have children together, but Genevieve has a son, 51, and Dann has two sons, 36 and 39, from their previous marriages. In 2006, Dann was diagnosed with Stage III lung cancer. By this point, Genevieve had helped her identical twin sister, Charlotte, recover from breast cancer and had lost her mom to uterine cancer. Dann had adenocarcinoma, a type of non-small-cell lung cancer. It showed up as a spot on his lung after his primary care doctor ordered an X-ray to evaluate a stubborn pain in his lower back. His oncologist ordered two rounds of chemo, followed by a lobectomy to remove the upper left lobe of his lung and then two more rounds of chemo to sweep up anything that might be left over.
COURTESY OF DANN WONSER/HEIDI VON TAGEN
BY KATE FERGUSON
“We get a lot of support from sharing our feelings with each other,� Dann Wonser says of his wife, Genevieve de Renne.
“I’ve had several family members pass away from cancer,” Genevieve says. “It’s just a hard experience when you’re living it and watching with that helpless feeling because there’s nothing that you can really do. You have to walk that line between helping and enabling, and you can’t enable somebody.” Most experts agree that a cancer diagnosis can either strengthen or destroy romantic relationships. For Dann and Genevieve, the difficult experience was eased by the trust that they’re a team, which brought them closer together than ever. But the challenges they faced also forced them to evolve as a couple.
HEALING ART
LETTING GO, STAYING HONEST Cancer can cause individuals to feel isolated, but the illness affects everyone in a family. Although Dann is ultimately the one responsible for making decisions about his care, Genevieve, as his wife and care supporter, shares in his experience.
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Of her paintings (shown above), Genevieve de Renne says, “My art is greatly impacted by the energy of healing it imparts to the viewer. Intention and symbology can awaken a place where the subtle properties of vibration, frequency, light and color are perceived to heal each cell in the body.”
One of her hardest tasks was learning how to be a supportive spouse and knowing when to relinquish control. Genevieve accompanies Dann to his appointments but respects his autonomy to be his own spokesperson. “Dann definitely did not want me to speak for him,” she says. “Although I like to control situations, I had to channel that in different ways.” The way she does this, Dann says, is to do “every other thing humanly possible to help me live.” One piece of advice they have for couples facing health problems is to communicate honestly and openly about each other’s feelings and the changes that can arise and challenge their partnerships. “A few days after my diagnosis, I remember lying in bed with Genevieve and telling her that no matter what happened, I wanted us to share with each other whatever concerned us—medically and otherwise—that we not keep secrets from each other and that we were going through this together,” Dann says. “She said yes, and since that moment, we’ve been closer.”
COURTESY OF DANN WONSER
Shortly after Dann’s diagnosis, Genevieve rekindled her lifelong love affair with painting and took a two-year art course in Washington state with her sister. It was tough to be away from Dann for the weeklong workshops that took place every three months. But Genevieve came back with a new body of work, full of symbols. She would draw while waiting for Dann to complete his chemotherapy treatments. “I have healing codes in all of my work,” she says. “It just comes from that intuitive right brain part of me that says, ‘Yes, this is what’s needed.’ My art is not just a flower on the canvas; it’s like a multidimensional healing portal, a vibrational energy source that I think art taps into.” She helped Dann, a commercial real estate broker who semi-retired this year, find a top oncologist and a surgeon. When he started chemo, she watched him lose his hair and experience nausea and brain fog. “There were times when I was sitting on the sofa just staring out into space,” he says. Dann would try to reassure his wife that he was doing fine by saying that the side effects “just tell you that the chemo is working and doing its job.”
A DEVASTATING TURN Perhaps the most terrifying moment in Dann’s cancer journey happened near the five-year mark in 2011. When he reported for a routine CT scan, after showing no signs of cancer for four and a half years, the results showed hundreds of little spots in his lungs. His oncologist had relocated, so he was assigned to another doctor in the practice. But his new doctor was unperturbed. “He didn’t think it was lung cancer, so he said, ‘Let’s wait until the next scan in another four months,’” Dann says. By then, there were thousands of spots, and they were bigger. His doctor still didn’t think it was cancer. “He thought it might be lupus or tuberculosis. But he ordered a biopsy to find out,” Dann says. Then he told Dann that if it turned out to be cancer to have the office connect him with another doctor, since he was not a lung cancer specialist. Both Dann and Genevieve were shocked. His first oncologist had been a lung cancer specialist, so they had assumed that this doctor was one too because he was a partner at the same practice. “He was a specialist in prostate cancer,” Dann says. “That was a lesson for me about needing to be my own advocate and doing some research.” The biopsy results showed that Dann had progressed to Stage IV metastatic lung cancer. “I was stunned and drove straight over to Genevieve’s office,” he says. “We were just dumbfounded. It didn’t make any sense to her.” Later that night, Dann overheard Genevieve in tears on the phone as she told her sister that she didn’t know what to do. “I’ve never felt so helpless in my life,” he says. After a few days, the two rallied, and the teamwork commenced. His clinic couldn’t refer him to a lung cancer specialist, but Genevieve found two reputable oncologists he could see. Dann called and learned that both were available. “We immediately switched to Oregon Health and Sciences University,” she says. In 2011, Dann was unaware that there were targeted therapies or immunotherapies for lung cancer. But at the first appointment, Dann learned that treatments were available for two genetic mutations, including an EGFR inhibitor, a targeted therapy, that had just been approved for lung cancer by the Food and Drug Administration (FDA) and would be available in two weeks. The doctor asked whether he wanted to participate in a research project to study the lung cancer genetic mutations that were known at that time. Currently, there are seven mutations with FDA-approved targeted therapies. (To For more survivor profiles: cancerhealth.com/magazines
read more about genomic testing and precision medicine, see “Meeting Your Match,” page 18, and Basics: Lung Cancer Treatment, page 26.) Since the previous clinic had told him he didn’t have the right mutations, Dann decided to start chemo instead of waiting for the targeted therapy. That’s when he learned he had one of the treatable mutations after all. The news made him even more grateful for Genevieve’s tenacity in helping him find a bona fide lung cancer specialist. “If I hadn’t switched to the new hospital system and gotten retested, I wouldn’t have known, and they would have treated me with chemo, and that would have been the end of it,” he says. “I’ve had several lucky breaks that have kept me alive. But none of us should have to rely on luck, and that’s why we need to keep research going.”
STAYING ALIVE, TOGETHER In 2014, fortune again smiled on Dann when a friend of his who had the same lung cancer mutation told him he was participating in a clinical trial in San Diego for a new experimental targeted therapy, a second-line EGFR inhibitor used only for people whose cancer has progressed after using a first-line EGFR inhibitor. Dann’s oncologist had run out of options, so Dann told him about the clinical trial, which was set to close in a week. The trial coordinator was going on vacation so he had to submit all his medical records that same day. After Dann called all his contacts in the hospital systems, at 5:30 p.m., on the last day of trial enrollment, he received an email. He’d been given an appointment for the following Tuesday. Dann says the new drug, which he still takes, was quickly approved by the FDA because the results were so outstanding. “The average time on it without progression is 13 months, and I’ve been on it now six years without progression,” he says. “I’ve been really fortunate.” As time passed, Dann and Genevieve also blossomed individually within their loving relationship. Dann, an extremely private person, opened up to others living with cancer. He started a blog called Dann’s Cancer Chronicles and shared his story in a book titled Second Wind: Thriving With Cancer. All the profits from Dann’s book benefit two lung cancer organizations, LUNGevity and the Go2 Foundation for Lung Cancer. As for his wife, Dann says, “What hit me over time is the depth of Genevieve’s heart; it’s been the greatest gift in my life.” ■
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MEETING YOUR MATCH Genomic testing can help customize treatment to target tumors. BY LIZ HIGHLEYMAN
OVER THE PAST TWO DECADES, TARGETED therapy and immunotherapy have ushered in a new era of precision medicine for people with cancer. These medications can slow disease progression and improve survival, but they don’t work for everyone.
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TESTING AND TARGETING Different types of tests look for cancer biomarkers that provide useful information—for example, whether tumors have so-called driver, or activating, mutations that trigger cancer growth, have a high level of certain receptors or have a large number of mutations that make them easier for the immune system to recognize. In some cases, these tests can point the way to better treatment. Targeted therapies work against cancer with specific gene mutations or other unique molecular features. Because they specifically target cancer cells, they generally cause fewer side effects than traditional chemotherapy. Antibody-drug conjugates use antibodies to deliver potent chemotherapy drugs directly to targeted
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That’s where genomic testing comes in. Targeted therapies, which fight cancer with specific characteristics, work very well for some people, but they are not effective for others who may have the same type of cancer but with a different genomic profile. Testing the genetic makeup of a tumor can reveal vulnerabilities that make it susceptible to certain medications, allowing doctors to design a customized regimen. “Genomic testing is incredibly important. This is how we bring precision to cancer care,” says Christine Lovly, MD, PhD, an associate professor at Vanderbilt-Ingram Cancer Center and a former Damon Runyon Cancer Research Foundation clinical investigator. “Personalized cancer medicine is based on looking at the tumor and figuring out from its DNA what’s gone wrong. What genes or tumor-signaling pathways have been altered, causing the cancer to grow uncontrollably and spread? We try to target those mutations to give a more precise way to kill the tumor.” Tumor genomic profiling, which identifies molecular al-
terations that arise over time in cancer cells, differs from genetic testing to determine whether an individual has hereditary risk factors for cancer, such as BRCA gene mutations or Lynch syndrome. “In general, when we’re talking about tumor testing, we’re talking about a kind of mutation called somatic mutations. Those are mutations that occur in the tumor that are not heritable,” Lovly explains. “By genetic testing, we usually mean testing your germline mutations, the genetic variants that you get from your mom and your dad.”
cancer cells (see “Warrior Artist,” page 32). Although not as precise, checkpoint inhibitor immunotherapy works best against tumors with specific genetic features. Immunohistochemistry, an older type of test, looks for proteins or receptors in cancer cells, rather than directly detecting the genetic alterations that produce them. Breast cancer, for example, is classified based on the receptors it expresses. Most breast tumors carry estrogen receptors. One of the first targeted therapies, tamoxifen, blocks estrogen receptors and prevents the hormone from stimulating cancer growth. Other breast tumors overexpress a receptor called HER2. They can be treated with HER2 inhibitors, such as Herceptin (trastuzumab), and antibody-drug conjugates that use the receptor to deliver chemotherapy. Triple-negative breast cancer doesn’t express any of these receptors and is harder to treat, but it may be susceptible to other types of targeted therapy. Unlike these older tests, genomic testing sequences the DNA, or the genetic blueprint, of cancer cells. Targetable genetic alterations—which can include gene mutations, fusions, rearrangements or deletions—usually affect signaling pathways that control cell division and death. Driver mutations may either boost the activity of genes that cause uncontrolled cell growth, known as oncogenes, or turn off tumor suppressor genes. Some of these molecular alterations are rare, occurring in just 1% or 2% of all cancers; others are more common. Some types of cancer, such as lung cancer, are known to
carry multiple mutations that can be targeted with available drugs, while others, like pancreatic cancer, have few or none—at least not yet. Non-small-cell lung cancer, especially a subtype known as adenocarcinoma, has many potential driver mutations. The Food and Drug Administration has approved drugs that target seven such gene mutations or fusions: ALK, BRAF, EGFR, MET, NTRK, RET and ROS1. The distribution of these genomic alterations varies across population groups, but most are uncommon. Several other potential driver mutations with matched drugs are being explored in clinical trials. Drugs that work against cancer with KRAS mutations are a long-awaited breakthrough because these genetic alterations are much more common. KRAS mutations, along with changes in the related HRAS and NRAS oncogenes, are thought to be involved in around a third of all cancers. Several experimental KRAS inhibitors are in development, including a couple in late-stage trials (see Care & Treatment, page 4). Around half of people with cancer have mutations in the tumor suppressor gene TP53, known as “the guardian of the genome” for its role in repairing DNA and halting uncontrolled cell division. Therapies targeting TP53 are another holy grail of oncology research. Site-agnostic, or pancancer, therapies are designed to treat cancer with specific genetic alterations regardless of where they occur in the body. The first pancancer drug, N
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Black people with cancer. Initially, genomic testing involved a laborious process of testing for suspected mutations one at a time in a piece of tumor tissue removed during surgery or a biopsy. But the process has gotten easier and cheaper. Next-generation sequencing now allows analysis of hundreds of mutations at once. What’s more, tests known as liquid biopsies analyze DNA or other biomarkers from cancer cells circulating in the bloodstream. This enables repeat testing—important because the genetic makeup of tumors can change over time—without subjecting patients to multiple invasive procedures. Two such tests, Guardant360 CDx and FoundationOne Liquid CDx, were approved by the Food and Drug Administration PRECISION MEDICINE earlier this year. So who’s eligible for genomic testing? While many targetable gene mutaTumor profiling is most frequently used Christine Lovly, MD, PhD tions are uncommon, the low odds of for cancers that may have genetic altera- (top), and Piro Lito, MD, having any one of them can add up. As tions that allow them to be targeted by PhD, are studying targeted more targeted therapies are developed, a approved or experimental medications. therapies for cancer. growing proportion of patients will have Genomic testing is increasingly used to guide treatment for common cancers, including breast, at least one actionable alteration. The National Cancer Institute’s Molecular Analysis colorectal, ovarian and prostate cancer, as well as rare ones. It is most often recommended for people with ad- for Therapy Choice (NCI-MATCH) study aims to determine whether targeted therapies are effective against vanced, metastatic or relapsed cancer. “It’s used for a lot of cancers now,” says Lovly. “For cancer with certain mutations. Launched in 2015, the some cancers, genomic testing is the standard of care, but trial has dozens of treatment arms, and more are being not for all, and even within a certain type of cancer, it added as new therapies are developed. A recent analysis looked at the first 6,000 enrolled patients, who had revaries by stage and histology.” But concerns about the cost—and cost effectiveness— lapsed cancer after standard treatment or rare cancers of genomic testing have hindered wider use. One commer- with no standard treatment. The study found that 38% cial test that analyzes more than 300 tumor genes costs had at least one actionable molecular alteration that nearly $6,000. Genomic profiling is often covered by could be matched to one of the study drugs, and some Medicare. Private insurance plans vary, but Lovly says she people had several; rates ranged from more than 35% for bladder cancer to less than 6% for pancreatic cancer and has never had genomic sequencing denied by an insurer. A recent survey by the American Cancer Society’s small-cell lung cancer. A growing number of experts think more people with Cancer Action Network (ACS CAN) found that only about a third of people with cancer reported receiving advanced cancer should receive tumor genomic profiling biomarker testing. Among those who did not, more to help guide their treatment. But given its cost and the than a quarter said it was because their insurance would fact that only a minority of patients currently stand to not fully cover it. Disparities in access to genomic test- benefit, universal testing remains controversial. “Molecular testing of cancer tissue is an essential part ing are thought to contribute to poorer outcomes among
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(LOVLY) COURTESY OF CHRISTINA LOVLY, MD, PHD; (LITO) COURTESY OF DAMON RUNYON CANCER RESEARCH FOUNDATION
Vitrakvi (larotrectinib), blocks proteins that arise from NTRK gene fusions, which act as an ignition switch to spur tumor growth. (See “TRACKing Rare Mutations,” next page.) Testing to guide immunotherapy works a bit differently. Instead of detecting specific targetable mutations, the tests look for tumors with high microsatellite instability (MSI-high), mismatch repair deficiency (dMMR) or a high tumor mutation burden (TMB-high). These tumors have many mutations that make them easier for T cells to recognize. The checkpoint inhibitor Keytruda (pembrolizumab) is approved for MSIhigh and TMB-high cancers anywhere in the body.
of treatment,” says Piro Lito, MD, PhD, of Memorial Sloan Kettering Cancer Center, also a former Damon Runyon clinical investigator. “It can help identify driver alterations that are susceptible to targeted therapies and immunotherapy. Advances in liquid biopsy now enable tracking of many genetic alterations during treatment.” However, it’s important to remember that having a targetable mutation does not necessarily mean that a matched targeted therapy will work for a particular patient. Vinay Prasad, MD, MPH, of the University of California at San Francisco, cautions that widespread testing could lead doctors to prescribe drugs that target specific mutations but that have not yet been shown to provide clinical benefits in randomized trials.
Genomic testing appears destined to become more widely used as streamlined technology and market competition lower prices. New cancer-causing mutations are continually being discovered, and hundreds of clinical trials are underway to test novel drugs to target them, raising the odds of finding a good match. “The rapid increase in the development of new targeted treatments and diagnostics within precision medicine is providing doctors and patients with better, more effective ways of treating this disease,” says Cancer Action Network president Lisa Lacasse. “But with this opportunity comes the responsibility to ensure patients have access to the diagnostic testing necessary to utilize this promising treatment strategy.” ■
TRACKing Rare Mutations
After being treated for thyroid cancer with a rare mutation, Susan is helping educate others.
SUSAN, A PENNSYLVANIA RESIdent in her 50s, was diagnosed with thyroid cancer in 2004. She underwent surgery to remove the gland, followed by standard treatment with radioactive iodine to destroy any remaining cancer cells. (Susan asked that we not use her last name.) “I was told not to worry about it; I had a 98% chance of a cure,” she says. But in 2008, she had a recurrence. She went to a cancer center in Philadelphia for further evaluation. A tumor was found on her spine, which was treated with radiation. Then scans revealed that the cancer had spread to her lungs. Over the next decade, as her cancer progressed, Susan received more radioactive iodine treatments at very high doses. She developed a tumor in her neck, which was removed and grew back twice. Running out of options, in November 2017, she saw a new oncologist who suggested genomic testing. “I said ‘Yes, sign me up!’” she recalls. “I was concerned about the financial aspects because some insurance
companies don’t pay for it, but at this point, I was desperate and said, ‘Let’s do it.’ It ended up being one of the best appointments ever.” The tests revealed that Susan’s cancer had a rare DNA mutation, known as an NTRK fusion, that spurs cancer growth. These gene fusions occur in only around 1% of cancers overall, but they’re more common in certain rare malignancies, incuding some types of thyroid cancer. She also learned that there was a clinical trial of an experimental drug that targets this specific genetic alteration. In August 2018, she started taking Vitrakvi (larotrectinib), a twicedaily pill. The treatment was approved in November that year. “Within five days, my neck tumor was literally smoother where the bump was,” Susan says. “My wheezing when I exercised went away. My scans showed tumor shrinkage right away.” By January 2019, her scans showed a 50% reduction, and her cancer has been stable or getting smaller ever since. Susan searched Facebook and
other social media and found about a dozen other patients taking the same drug. She started messaging them, and they all replied within a day. “They said ‘I’m so glad you found me,’” she recalls. “People wanted to connect with others who had this thing that’s so rare.” Through her advocacy, Susan met Jim Palma, executive director of the TargetCancer Foundation, and joined the advisory council for the TRACK trial, providing a patient perspective and helping design the study. TRACK (supported by Vitrakvi manufacturer Bayer) aims to enroll 400 participants with rare cancers who will receive genomic testing to see whether they have tumor mutations that can be matched to targeted therapies and whether these treatments delay disease progression. “Genomic biomarker testing has to be made more affordable and accessible,” Susan says. “It’s a shame how many people we’ve lost because they weren’t tested. Everyone should have access. It’s a gamechanger. It can completely change the course of your cancer journey.”
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RADICAL ACCEPTANCE BY JENNIFER L. COOK 22 CancerHealth WINTER 2021 cancerhealth.com
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Psychologist Seth Axelrod, PhD, has metastatic bone cancer—and a unique set of therapeutic skills that help him live with it.
COURTESY OF SETH AXELROD
EVERY PERSON LIVING WITH CANCER HAS A STORY ABOUT THE life-altering effects of their diagnosis. Each story is unique but also universal. One moment, you’re living life as you’ve defined it—working, socializing, taking care of your family, doing laundry, paying bills, planning vacations. The next moment, you’ve entered Cancerland, a bewildering alternate reality filled with medical appointments, hours of online research, confusing terms, mind-numbing risk-benefit calculations, difficult treatments, pain, health insurance battles, financial challenges and an emotional roller coaster of fear, worry, sadness, anger and grief. Coping with it all often becomes its own full-time job. That theme of normalcy turned upside down unfolds in the story of Seth Axelrod, PhD, too. But he’s had an edge in dealing with the emotional challenges of his own complex, difficult and often-changing cancer journey: He’s a leading educator and practitioner of a form of psychotherapy that has been scientifically shown to help people experiencing extreme emotional stress find a path toward balance. It’s called dialectical behavioral therapy (DBT). An evidence-based form of psychotherapy, DBT combines coping skills derived from cognitive behavioral therapy with concepts of mindfulness and accepSeth Axelrod, tance derived from Zen Buddhism— minus any religious overlay. Since his PhD, uses DBT skills to cope diagnosis, Axelrod—an associate pro- with the cancer fessor of psychiatry at Yale University roller coaster. School of Medicine, DBT therapist and head of DBT services at Yale New Haven Psychiatric Hospital—has learned new ways to use its powerful tools for himself. THE FOUR SKILL SETS OF DBT Developed by University of Washington psychology professor Marsha Linehan, PhD, ABPP, in the late
1980s, DBT first showed success as a treatment for borderline personality disorder, which is characterized by difficulty regulating emotions and increased suicide risk. Later research found it was also effective in treating depression, eating disorders, posttraumatic stress disorder and substance use. Now, there’s growing interest in using DBT to help people with cancer, who often experience severe and sometimes long-lasting symptoms of depression and anxiety. At the core of DBT training is the development of four sets of behavioral skills with a trained therapist, according to the University of Washington’s Behavioral Research and Therapy Clinics: • Mindfulness: the practice of being fully aware and present in this one moment • Distress tolerance: how to tolerate emotional or physical pain, not change it, in difficult situations • Interpersonal effectiveness: how to ask for what you want and say no while maintaining self-respect and relationships with others • Emotion regulation: how to decrease vulnerability to painful emotions and change emotions that you want to change.
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DBT aims to promote a balance between dialectical opposites: acceptance of what is, on the one hand, and openness to change, on the other. A SHOCKING PAIN When cancer interrupted the flow of their lives, Axelrod and his wife, Rebecca, were raising their daughter and son (then 13 and 11), singing together at various venues and actively participating in their synagogue. The first sign of Axelrod’s cancer occurred in November 2012, when he was 42 and experienced intermittent, shock-like pain on the right side of his back and chest. His doctor noticed a protruding rib and sent him to a physical therapist, but the shocks became more debilitating. Over several months, Axelrod saw a series of doctors, including a chiropractor, an osteopath and a physiatrist. Finally, after leading a weeklong DBT training and having trouble standing during the day (“I was contorting myself ”) and sleeping at night, he had two MRIs and a biopsy. It was October 2013—almost a year since his pain had started. The diagnosis: chondrosarcoma, a rare cancer that originates in bone. The tumor in his spine was lodged beneath and included the displaced rib. With major surgery and advanced proton radiation therapy, a cure was possible. Even so, the floor fell out from under Axelrod when he received the cancer diagnosis. And there was the sheer terror of the surgery, even though it came with the glimmer of a turning point. One of the DBT skills he teaches and practices is “radical acceptance”—a concept based in mindfulness that involves acknowledging the reality you are confronting and accepting life as it is, rather than fighting or resisting it. In episode 64 of the podcast To Hell and Back, one of four episodes he participated in with psychiatrist and DBT expert Charles Swenson, MD, who is on the faculty of the University of Massachusetts School of Medicine (see “Getting Started: DBT and Cancer,” next page), Axelrod explained that before the diagnosis, the only thing to accept was the uncertainty of his painful condition.
“But at that point, this horrible thing was labeled, and I could work at radically accepting having a cancer diagnosis. On that day, I could start making a turn from crisis mode to acceptance,” he explains. MANAGING CANCER WITH DBT SKILLS That experience was the first of countless instances in which Axelrod’s DBT skills have helped him manage life with cancer with equanimity, grace and resilience. His surgery to remove the original tumor, in March 2014, was a complicated 22-hour marathon staged over two days, the second of which was his 44th birthday. (“This year I am the cake,” he noted on Facebook, with characteristic humor.) Only Rebecca knew of his terror, going into the surgery, that he might not survive. Using DBT, he practiced acceptance, telling himself, I’m where I need to be; this is something I can go along with. It’s OK to be anxious. Afterward, he endured a long and arduous recovery but felt buoyed both by his family’s support and, after a series of clean threemonth scans, by the possibility that his cancer journey might be ending. However, a scan in December 2015 revealed a lung metastasis. “That was another turn of shock and acceptance,” says Axelrod. In all likelihood, he found out, there would be more, but their slow progression would allow time to reassess and explore treatment options. In episode 66 of To Hell and Back, Axelrod spoke of going on a silent mindfulness retreat soon after receiving the news of that first metastasis. In the midst of struggling with the diagnosis and the awareness of his own mortality, he had a kind of epiphany, where he could see the cycles of life and death and how things are connected, and he experienced being part of a much larger cycle. “It’s like the astronauts in space who see Earth for the first time and see its problems differently,” he says. That awakening— and the recognition that although he doesn’t know the outcome, the odds aren’t great—has led him to think carefully about the kinds of commitments he makes and how they contribute to the lives of others.
IT’S LIKE ASTRONAUTS IN SPACE WHO SEE EARTH AND SEE ITS PROBLEMS DIFFERENTLY.
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COURTESY OF GUILFORD PRESS
BECOMING HIS OWN ADVOCATE DBT isn’t just about acceptance, however. It’s also about “interpersonal effectiveness”—asking for what you want and need. Over the past four years, Axelrod has continued treatment via clinical trials, including targeted therapies and a personalized cancer vaccine combined with immunotherapy. DBT has helped him with those decisions too. “Besides accepting the lack of control, not knowing, there’s also being an active self-advocate, not just for getting support but also for health care, learning about the treatments, speaking with doctors and dealing with insurance companies,” he says. “I’m satisfied with my efforts to communicate effectively with providers, to do my own problem-solving. I’ve also been able to share with the chondrosarcoma community and connect them to clinical trials. Those things—communication, assertiveness, problem-solving—also come from DBT skills.” Despite increasing fatigue, ongoing pain and end-ofday crashes from dwindling energy, Axelrod has continued to work, although since 2016, he’s down to an 80% workload with 20% long-term disability. Recently, the COVID-19 pandemic has led to his self-isolation because the three lung surgeries and three bouts of radiation he’s had have rendered him especially vulnerable. “Suddenly, it’s almost as if life is adjusting to my special needs, because I can get more done spending time in my chair than if I’m driving around in my car,” he says. “It’s really odd, but I think I can be more productive in this new format that the world is falling into. “My experience going through treatments and going through the cancer, it’s absolutely been a roller coaster. There have been very few months where I haven’t run into something that’s dropped the ground out from under me,” Axelrod says. And he misses some things, such as singing, an activity that now aggravates his pain but always brought him joy. “I think the last time I sang publicly was the summer of 2019, with a small men’s chorus singing ‘The Star-Spangled Banner’ at the opening of a minorleague baseball game.” Big picture, he has no bitterness, accepting that his cancer is a natural trauma—no one is to blame—and accepting the cards he’s been dealt. This, too, is a gift from DBT, he explains: being able to see and step back, while being open. “Radical acceptance of cancer is so many things, but one is as simple as ‘I am a person with cancer,’” Axelrod says. “It takes time, but you can ease into it. Eventually, you can go from ‘Why me?’ to ‘Why not me?’” ■
GETTING STARTED: DBT AND CANCER Although dialectical behavioral therapy (DBT) for people with cancer is new, using it to help individuals cope with cancer’s emotional highs and lows is growing. Here are some ways to learn more: COPING WITH CANCER: DBT SKILLS TO MANAGE YOUR EMOTIONS—AND BALANCE UNCERTAINTY WITH HOPE (Guilford Press), due to be published in January 2021, is written by Marsha Linehan, PhD, ABPP, who developed DBT, and psychoanalyst and cancer survivor Elizabeth Cohn Stuntz, LCSW. It provides coping strategies to reduce overly intense feelings both by changing how you think and by modifying your body’s reaction. You can reduce fear and anxiety, for example, by recognizing that it’s possible to be both scared and hopeful—two emotions that might be considered dialectical opposites—while also calming your nervous system with breathing and muscle relaxation techniques. The book includes many stories of people touched by cancer and illustrates ways to make effective decisions, communicate with friends, family, colleagues and medical professionals and live meaningfully. It can be preordered at Guilford.com. TO HELL AND BACK is a podcast developed by psychiatrist and DBT expert Charles Swenson, MD. (Check out episode 64, with Axelrod.) charlieswenson.com/podcasts BEHAVIORAL TECH, a website by Linehan, is a great introduction. behavioraltech.org DBTSELFHELP, developed by an individual who benefited from DBT, has a variety of resources. www.dbtselfhelp.com YIELD. This YouTube channel was started by Yale University’s DBT program. youtube.com/ channel/UCnwIV-c0P2tH0UVBrNpXk9Q/ playlists
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YOUR TEAM
BY BOB BARNETT
Managing Cancer Pain
Anesthesiologist and pain medicine specialist David J. Copenhaver, MD, MPH, is director of the cancer pain management program at the University of California, Davis.
When should a pain specialist become part of your team? Work with your oncologist to understand whether your therapy may cause pain. Whether it’s chemotherapy, radiation or surgery, if it’s known to cause pain, it’s never too early to work with a pain specialist. Lung cancer surgery is a good example. Both open and minimally invasive surgery can lead to lingering post-surgery pain. But quieting the nerves in that body region before surgery reduces the chance. We may place an epidural catheter to deliver numbing medications. Then, when the incision is made, it’s less pain-provoking. After surgery, pain specialists are also intimately involved in reducing pain and improving function. What about cancer survivors? Even many months after treatment, pain can be significant, but fortunately, many new strategies can help. We have oral and intravenous medications, gels, creams, lollipops, suppositories, patches, sublingual films, specialized compounded medications and implantable devices. For
Pain specialists have new ways to help people with cancer, says David J. Copenhaver, MD, MPH.
chemotherapy-induced neuropathy, for example, we can implant a pacemaker-like device that distracts the brain from pain in the lower extremities. What role do opioids play? They are still a mainstay but can be used in different ways, and sometimes don’t need to be used at all. We also have safer opioids that cause less respiratory depression, nausea, cognitive impairment and constipation. We may combine them with non-opioid meds. For some, cancer has become a chronic disease, and opioid therapy may not be the best strategy. For example, multiple myeloma often causes back pain, but we treat it with targeted
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injections as well as ablative techniques that render the joints in the lumbar or thoracic spine insensate. These can be incredibly effective. For patients receiving chemotherapy who have neuropathy in the hands and feet, medications such as the antidepressant Cymbalta or IV ketamine therapies involving low-dose infusions over many hours can have lasting results. Nondrug approaches, including specialized physical therapy, therapeutic massage and acupuncture, are also helpful. Does cannabis play a role? Yes, but you need a medical professional to help customize your therapy. There are various types of CBD cannabinoids, but one of them, CBD-A, has great topical pain potential, decreases nausea and actually has anticancer effects. It can be complemented with THC compounds. Cannabis can work with therapies you are already taking. What inspires you? Pain can be isolating and allconsuming. You don’t want to leave the house, walk in the park, interact with family and friends. The most inspiring part of my job is to see people engage in life again, not just to live but to live well. It’s an honor to take care of people and make a living doing it. For that, I am grateful. Who’s on your team? cancerhealth.com/team
COURTESY OF UC REGENTS
What is a pain specialist? It’s a board certification, a oneyear training that a physician receives. Within that training, we are finding that cancer pain is a unique and important niche.
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HOW TO
BY KATE FERGUSON
Share time and thoughts to build a sense of purpose.
Support Your Partner Take steps to help meet each other’s needs now.
A CANCER DIAGNOSIS HAS PROFOUND EFFECTS ON THE PERSON diagnosed as well as their loved ones. Intimate relationships in particular are especially challenging during this time, when people are most vulnerable to a variety of physical and emotional stressors. Although many challenges may arise, the tips below can help partners address them before precious bonds are broken. The first challenge is to communicate openly and honestly with each other. Partners may become afraid to express how they really feel when cancer strikes a significant other. Individuals may feel helpless in the face of a disease many still regard as a killer lying in wait. The partner with cancer may feel pressure to maintain a positive attitude, while the caregiving partner may hold back expressing fears to avoid compounding stress. Talk is therapeutic. Only through sharing our thoughts and emotions can we learn to become less fearful. Frequently, all people want is someone to listen to what they have to say, especially about how they’re feeling. Conversations often don’t even have to be about cancer. Face cancer together. In a partnership where one person has cancer, the disease can act to separate individuals from each other and promote isolation. Determine together which decisions will be made jointly and which ones should be made alone. Confront uncomfortable issues. Whatever problems, thoughts, questions and concerns each of you has, name them respectfully so your partner won’t feel threatened or humiliated. Consider speaking with a professional therapist for suggestions about how to manage any problems cancer may be causing. (See Resources: Emotional Support, page 29.) Rethink priorities. Managing any chronic illness requires reassessing future plans. Couples should focus first and foremost on the partner undergoing cancer treatment. At this time, it’s important to be flexible should your plans need to change permanently. As you adjust to the challenges of a cancer diagnosis together, new opportunities may arise. ■
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1
Communicate openly. Don’t be afraid to express your fears to each other.
2
Face cancer as a team. Determine together which decisions will be made jointly and which ones should be made alone.
3
Confront the uncomfortable. Cancer can impair libido, mood and self-esteem. You may want to see a therapist to help you manage problems together.
4
Reprioritize. A chronic illness can affect future plans and goals. But you can find new ones to replace them.
ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
4 WAYS COUPLES CAN GET STRONGER
BY ALICIA GREEN
RESOURCES
Emotional Support CANCER CAN TAKE A TOLL ON YOUR MENTAL AND EMOTIONAL health, whether you are recently diagnosed or have been living with it for years. These resources can help you find the support you need.
American Cancer Society csn.cancer.org
The ACS Cancer Survivors Network is a free online community that brings together people whose lives have been touched by cancer to find strength and inspiration from one another’s stories. Call ACS at 800-227-2345 for help connecting to support groups and social services. American Psychological Association
vidual and support group counseling. Call 800-813-HOPE (4673). Cancer Hope Network cancerhopenetwork.org
Thanks to the Cancer Hope Network’s more than 400 support volunteers, you don’t have to face cancer alone. These trained cancer survivors and caregivers are ready to listen and provide support during your cancer journey. Call 877-HOPENET (467-3638).
livestrong.org/we-can-help/ livestrong-cancer-navigation
Whether you are dealing with anxiety or depression or simply distressed by the challenges of your diagnosis, talking to a mental health professional can help. Many offer telehealth. APA’s Psychologist Locator can help you find the right psychologist in your area. (Psychology Today also has a therapist finder to help locate a cancer therapist. Go to psychologytoday.com/us/ therapists/cancer.)
Cancer.Net
CancerCare
Cancer Support Community offers free support and coaching for cancer patients and their loved ones. Call the Cancer Support Helpline at 888-793-9355 to ask an expert for guidance, resources or general support. In addition, the MyLifeLine online support community helps connect patients and caregivers.
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cancercare.org
CancerCare provides free professional support services for anyone affected by cancer. Online support groups help connect cancer patients, loved ones and people who have lost a loved one, while licensed oncology social workers provide indiDiscover more resources: cancerhealth.com/resources
Imerman Angels partners people seeking support with a Mentor Angel—a cancer survivor or caregiver who has faced the same type of cancer—for free. Mentor Angels also provide one-on-one assistance to those who have lost a loved one to cancer. Livestrong Cancer Navigation
locator.apa.org
www.cancer.net/coping-withcancer/finding-social-support-andinformation
The American Society of Clinical Oncology’s patient information website helps people with any type of cancer figure out when to seek counseling and how to find a support buddy or groups.
Livestrong Cancer Navigation matches cancer patients with a personal navigator to address their needs, including providing access to emotional support. Cancer navigators support patients every step of the way and follow up regularly by phone. Call 855-220-7777. Young Survival Coalition
Cancer Support Community cancersupportcommunity.org/ cancer-support-helpline
Imerman Angels imermanangels.org
www.youngsurvival.org
Young adults affected by breast cancer can connect with other survivors anytime, anywhere through YSC’s private Facebook groups, including those for caregivers and those for people with metastatic breast cancer. YSC’s virtual hangouts even allow you to connect with others from the comfort of your home. You can also join a local, in-person support group.
cancerhealth.com
WINTER 2021
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GOOD STUFF
BY KATE FERGUSON
WINTER COMFORTS Stay warm and healthy with soothing creams, stylish fashions, home-delivered meals and a soulful book.
BistroMD, a doctor-designed meal delivery service, makes a great gift for cancer patients undergoing treatment or those with restricted diets. Choose from among different plans, or let the experts help you build your own. Dishes undergo strict protocols in kitchens certified by the United States Department of Agriculture to ensure food safety. Meals designed around whole foods, high-quality protein and vegetables arrive frozen but can be ready to eat in five minutes. Weekly plan memberships start at $98 (five lunches/five dinners) and include support from a registered dietitian at no extra cost.
Grace B. Gold is a luxury fashion collection founded by designer Megan Sullivan. Her mom—diagnosed with Stage III breast cancer at age 42—needed a garment to conceal the surgical drain she wore after a mastectomy. The Ann Elizabeth ($120)—with its concealed, fitted drain pocket— and Eileen ($118) blouses feature wrap closures with a draping asymmetrical front panel. Perfect for women who’ve had breast-conserving operations, radiation treatment and upper-body surgeries.
Emmy Award–winning writer, speaker and cancer survivor Suleika Jaouad spent three and a half years undergoing extensive chemotherapy and a bone marrow transplant. When she left the hospital, she was cured of leukemia but profoundly adrift. Her book Between Two Kingdoms: A Memoir of a Life Interrupted ($28) chronicles a road trip she took in search of several strangers who’d written to her in the hospital. By the end of her journey, she’s learned much about the tenuous connection between sickness and health and, finally, how to start living life again.
Tommy Hilfiger Adaptive is a stylish line of functional clothing for those with disabilities. Price ranges are $30 to $250 for men, $35 to $250 for women and $20 to $100 for children. The collection of pants, shirts, shorts, dresses and jackets features one-handed zippers, adjustable hems, side-seam openings, adjustable waists, magnetic buttons and Velcro fasteners that make dressing infinitely easier.
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Desert Harvest products include Reléveum (4 oz., $27; 8 oz., $50), an all-in-one skin repair cream containing organic aloe vera, other healing botanicals and 4% lidocaine that treats pain, peeling skin and other symptoms of radiation dermatitis. Vitamins C, E and zinc support healthy tissue, help heal wounds and reduce discoloration. Aloe Glide (2 oz., $6; 4 oz., $10; and 8 oz., $18), a vaginal moisturizer and sexual lubricant, relieves dryness and burning, which can make sex painful and can be side effects of certain gynecological cancer treatments.
Find more products to make life easier: cancerhealth.com/good-stuff
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Footrest may vary by model
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LIFE WITH CANCER
BY SHELLEY KERR
Warrior Artist AT MY ANNUAL PHYSICAL recently, I was asked what I consider to be an odd question, “How would you rate your general health: poor, fair, good or excellent?” Hmm, I’m 65 and have Stage IV cancer. I’m excellent. Seven years ago, I was diagnosed with metastatic bladder cancer. My chance of living five years was 3%. I lost a kidney and my bladder, received a neobladder and later went through platinum-based chemo, three immunotherapies, radiation, more surgery and, finally, this amazing new treatment, an antibody-drug conjugate. Each therapy helped me live better—and longer. People told me that I had a great attitude. But it is not so much that I had a positive attitude; rather, I chose not to have a negative attitude. Cancer feeds off of stress and anxiety, and I wasn’t going to feed it. Instead, I chose to be a warrior. Although it was frightening at times—like looking down the barrel of a gun—I didn’t stay in that place long. I became a seasoned warrior, confident in the choice of whatever weapon got the job done. I’m not done yet! I am also an artist, which has allowed me to create something beautiful out of this ugly, scary disease. I have emerged as a more creative person, with a
different story to Ancient Greek tell and different mythology motivations. inspires Gratitude motisculptor Shelley Kerr. vated my To Live sculpture—gratitude toward my doctors and all the researchers, to the people who have supported me and for being alive. How could I positively represent my battle with a disease so destructive and life-threatening? Since modern medicine has roots in ancient Greece, I selected the ancient Greek verb “to live” (ζαωψ). The letters just magnetized into the shape of sculpture. I added a three-sided base with the Greek words for “soul/life” (ψυχη), for
32 CancerHealth WINTER 2021 cancerhealth.com
“art/skill/technology” (τεχνη) and for “healer/physician” (ψυχη). The Nebra Sky Swords sculpture was inspired by an early Bronze Age artifact that included swords, daggers and chisels. I was undergoing radiation therapy with billions (perhaps zillions!) of photons being sent into my tumor by a linear accelerator. Sounded like a weapon to me. Nebra Sky Swords represented my emergence as a seasoned warrior. In early 2019, my doctor at the University of Colorado Cancer Center, Thomas Flaig, MD, shared that an experimental antibody-drug conjugate treatment might work for me. He described it as a Trojan horse. An antibody specific to the tumor is linked with a potent chemo agent. The cell takes it inside (think Trojan horse), and the chemo attacks the cancer cells. I sculpted a Trojan horse to honor this amazing treatment. The title was Breakthrough. Sometimes, I am a warrior and gratefully have many weapons. Yet I am also on a gentler path that has allowed me to create things of beauty. I choose to handle very scary things with grace, love and creativity. I am blessed in that I can share a message of hope in very tangible ways by demonstrating both the warrior and the artist. ■
Shelley Kerr’s website is kerrartworks.com. To learn more about these sculptures, go to: cancerhealth.com/sculptor
(BREAKTHROUGH) COURTESY OF SHELLEY KERR/JAFE, INC.; (KERR) COURTESY OF SHELLEY KERR/CRAZY IDEA PHOTOGRAPHY
Shelley Kerr, 65, is an award-winning bronze sculptor who lives with her husband in Fort Collins, Colorado. She has Stage IV bladder cancer.
SURVEY
Have you ever declined a treatment because it would decrease your quality of life? ❑ Yes ❑ No
THE GOOD LIFE
Quality of life is a subjective measure of one’s ability to comfortably enjoy one’s life. For people living with cancer, it can factor into treatment decisions. Please take our survey and let Cancer Health know about your quality of life. How much do you worry about your health? ❑ Very much ❑ A little A moderate amount ❑ ❑ Not at all How much do you worry about your ability to access medical care? ❑ Very much ❑ A little ❑ A moderate amount ❑ Not at all Does physical pain ever prevent you from doing what you want to do? ❑ Yes ❑ No Do you get tired easily? ❑ Yes ❑ No Do you have any mobility issues? ❑ Yes ❑ No Are you satisfied with the quality of your medical care? ❑ Very satisfied ❑ Very dissatisfied Satisfi ed ❑ ❑ Neither satisfied nor dissatisfied ❑ Dissatisfied
ISTOCK
Do you consider quality of life when making treatment decisions? ❑ Yes ❑ No Have you ever chosen a treatment because it would increase your quality of life? ❑ Yes ❑ No
How often do you experience feelings of despair, anxiety or depression? ❑ Always ❑ Seldom ❑ Often ❑ Never How often do you have trouble sleeping? ❑ Always ❑ Seldom ❑ Often ❑ Never Are you happy with your personal relationships? ❑ Very happy ❑ Very unhappy ❑ Happy ❑ Neither happy nor unhappy ❑ Unhappy How much do you worry about money? ❑ Very much ❑ A little ❑ A moderate amount ❑ Not at all Do you make time to enjoy your life? ❑ Yes ❑ No What year were you born? _ _ _ _ What is your gender? ❑ Male ❑ Female ❑ Transgender ❑ Other What is your current level of education? ❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher What is your annual income? ❑ Less than $15,000 ❑ $50,000–$74,999 ❑ $15,000–$34,999 ❑ $75,000–$99,999 ❑ $35,000–$49,999 ❑ $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.
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