A SMART+STRONG PUBLICATION CANCERHEALTH.COM SUMMER 2019 $3.99
MELANOMA TRUE GRIT A survivor pays it forward Sleep Well Again Sun Protection Done Right
My Spouse, Caregiver, Hero Preserving Fertility A Breast Cancer Diary Feed Your Gut Microbiome Dan Engel
“Why Should I Get Screened?” Colorectal Cancer Screening Saves Lives
“I don’t have symptoms.” FACT: Colorectal cancer doesn’t always cause symptoms, especially early on.
Colorectal cancer is the 2nd leading cancer killer in the U.S. But it can be prevented. Screening helps find precancerous polyps so they can be removed before they turn into cancer. Screening can also find colorectal cancer early, when treatment is most effective. If you’re 50 or older—don’t wait. Talk to your doctor and get screened.
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“But that test...” FACT: There are several kinds of screening tests for colorectal cancer.
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EducationalCare
EmotionalCare PetCare FinancialCare LegalCare PracticalCare
If it matters to you, it matters to us. Meet Nolan. He’s a talented musician, LGBT activist and leukemia survivor. Nolan never thought he would need extra support services. But after a year of intensive treatment, he needed to be reacclimated to life outside the hospital. He needed help getting back into his social circles. He needed the most inspiring playlist to get through treatment. He needed CancerCare. For 75 years, CancerCare has been helping people manage the emotional, practical and financial challenges of cancer. We’re still here for Nolan, and we’re here for you, too. Get free professional support for anyone affected by cancer.
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FROM THE EDITOR
Cancer Health TM
EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman DEPUTY EDITOR Trent Straube SENIOR EDITOR Meave Gallagher COPY CHIEF Joe Mejía ASSISTANT EDITOR Alicia Green ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Timothy Henrich, MD, Carl June, MD, Gaby Kressly, Yung S. Lie, PhD, Gilberto Lopes, MD, Peter Pitts, Hope Rugo, MD FEEDBACK Cancer Health, 212 West 35th Street, 8th Floor, New York, NY 10001, or email info@cancerhealth.com 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 Caroline Rabiecki SALES OFFICE 212-938-2051 sales@cancerhealth.com BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com
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CDM PUBLISHING, LLC CHIEF EXECUTIVE OFFICER Jeremy Grayzel CONTROLLER Joel Kaplan Issue No. 6. Copyright © 2019 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.
Words We Need CAN HEAL. THESE WORDS ARE literally embedded in the title of this magazine, in red letters on the cover. Yet heal is not a word you are likely to hear from medical professionals. And for good reason—it’s hard to define. When we report science, we’ll use terms such as “progression-free survival,” “remission” and that beautiful phrase, “no evidence of disease.” Precise use of language helps researchers identify real progress in cancer medicine. Of late, that progress has been remarkable. Immunotherapy, which unleashes the immune system against cancer, can lead to cures for once-incurable diagnoses, such as Stage IV melanoma (see “I Don’t Have ‘Quit’ in Me,” page 16). Yet immunotherapy often fails, and researchers are working to find out why. Clues to improving its effectiveness may be found in the gut microbiome, the ecosystem of bacteria and other microorganisms in the intestines (see “The Microbiome Frontier,” page 24). We need accurate words—and research—for recovery too. “Sleep Solutions,” page 20, shines a light on how cancer and its treatments often disrupt sleep—and why taking simple steps to restore good sleep is so important for long-term recovery. Another way to improve quality of life is to work with an occupational therapist (see “Getting Your Life Back,” page 28). Healing—the word is related to “wholeness”—isn’t measurable, but it’s nevertheless essential. It’s different from cure. Jersi Baker (“A Breast Cancer
Diary,” page 14), whose metastatic breast cancer is treatable but incurable, has found a healing path through advocacy, modeling and founding a nonprofit. Robin McGee (“I Thought I Was Cured,” page 8), who is facing serious setbacks now that her Stage III colorectal cancer has recurred, finds enduring strength in her advocacy for access to the best treatments for people with cancer. In these pages, you’ll find more healing stories: a memory of kindness (“The Power of the Group,” page 11), an appreciation of caregivers (“Husband, Caregiver, Hero,” page 10) and a tale of joy against the odds (“And Then There Were Three,” page 32). We need the words to tell these stories too.
BOB BARNETT Editor-in-Chief bobb@cancerhealth.com Twitter: @BobCancerHealth
cancerhealth.com
SUMMER 2019
CancerHealth 3
BY BOB BARNETT AND TRENT STRAUBE
Start a Fresh Chapter If cancer has been the recent focus of your life story and you’re ready to turn the page, then consider A Fresh Chapter. The nonprofit organizes one- to two-week-long “volunteer experiences”—domestically and abroad—for cancer survivors and caregivers. Destinations have Terri included India, Peru, Costa Rica Wingham and South Africa. “Our mission is to heal the emotional scars of cancer through volunteerism, meaningful travel and programs designed to reframe adversity and redefine what’s possible,” explains founder and CEO Terri Wingham, who had breast cancer in 2009 when she was 30. In a quest to feel useful and empowered after that ordeal, she signed up for a volunteer program in Africa, where she learned that “struggle is universal and that even if I couldn’t go back to who I was before cancer, reinvention was possible.” Inspired by the trip, Wingham launched A Fresh Chapter in 2013 so that others affected by cancer could experience similar lifechanging rejuvenation. Each “odyssey” involves months of community building beforehand and is built on four pillars—volunteer, educate, empower, connect. To help cover the nearly $5,000 cost, volunteers get support in fundraising, and scholarships are available. About 230 people have embarked on an odyssey and served more than 33 volunteer programs. After a 2017 program in Peru, 75% of participants said they felt their life had more meaning, while others reported increased resilience, peace of mind and a sense of belonging. The nonprofit also offers another program, ReFresh Experience for Cancer Advocates and Leaders, which addresses burnout and compassion fatigue. To learn more and to apply, visit AFreshChapter.com. Remember, your future remains unwritten.
CLASSY TIP
Don’t use your favorite scented products, such as soaps and shampoos, during chemo. Why? Because after your treatment, the oncewonderful smell might make you nauseous. I’ve lost many a favorite brand that way. —Tip thanks to Cancer Health blogger Allison Ruddick aka @KeepCancrClassy
4 CancerHealth SUMMER 2019 cancerhealth.com
3 Pharmacies Go After Cancer When it comes to holistic cancer care, these pharmacies provide more than prescriptions. See whether your local drugstore offers similar help! • CVS Health committed $10 million to the American Cancer Society for research, patient services such as free transportation and lodging near hospitals, and tobaccofree initiatives. • Rite Aid partnered with the Skin Cancer Foundation to give clients free full-body skin cancer screenings—out of a roving RV traveling across country. • Walgreens launched its Feel More Like You program to offer consultations with beauty specialists who know how to counter the physical changes that accompany cancer treatment. After all, looking good is part of feeling better.
(WINGHAM) COURTESY OF A FRESH CHAPTER; (RX) ISTOCK
NEWS
SAVING JOHN PRINE’S VOICE
(PRINE) COURTESY OF JOHNPRINE.COM, (COMPUTER AND HANDS) ISTOCK
From his 1971 self-titled debut album to 2018’s Tree of Forgiveness, singer-songwriter John Prine’s songs have embraced pain with kindness and a wicked and whimsical sense of humor. Good thing Prine still has his voice. He has lost it twice. In 1998, after neck surgery and radiation for squamous cell cancer damaged his vocal cords, he spent a year in speech therapy. Then, in 2013, he had part of one lung removed to treat lung cancer, which left him too breathless to sing professionally. He credits a fi tness trainer buddy with tailoring a program that made sense to the fi tness-resistant singer. “He had me running up and down our staircase three times,” he told Terry Gross, host of
National Public Radio’s program Fresh Air. “Then he’d put a guitar around my neck, and I’d sing three songs without taking a breath. You know, and that was all after losing half a lung. I didn’t know I could train like that.” It paid off. This summer, Prine will tour in New York, Kentucky, Colorado, Utah, Oregon, Canada, Finland, Sweden, Norway, Holland, Germany, France and the United Kingdom. He’ll likely sing the song “Summer’s End,” from his latest album, which evokes loss and reconciliation: “Well, you never know how far from home you’re feelin’ / Until you’ve watched the shadows cross the ceilin’… Just come on home / Come on home. No, you don’t have to / Be alone / Just come on home.” John Prine
How to Stand Up for Yourself “Have you ever had to stand up for yourself to get the best cancer care?” When we asked that question in a poll on CancerHealth.com, 65% answered “yes.” It’s part of our online “Special Report: Cancer and Quality of Life,” which delves into obstacles that people with cancer often face—from side effects to financial burdens—and offers tips on how to better stand up for yourself. These include choosing the best cancer center, finding palliative care, getting financial help, exploring clinical trials and developing the best postcare plan. The full report is free online: cancerhealth/ special. Get more cancer news: cancerhealth.com/news
Websites Worth Watching Patient True Talk (patienttruetalk.com) Melanoma survivor Dan Engel created this peer-to-peer site to match people with cancer with survivors to help them navigate treatment and beyond. See “I Don’t Have ‘Quit’ In Me,” page 16. National Sleep Foundation (sleepfoundation.org) While not cancer specific, the NSF offers practical, evidencebased tactics to conquer sleep problems, which are common during and after cancer treatment. See “Sleep Solutions,” page 20. American Institute for Cancer Research (aicr.org) Is soy safe if you are being treated for breast cancer? Should you go vegan? Avoid sugar? AICR supports diet research and helps interpret it for the public. See “The Microbiome Frontier,” page 24. Follow cancerhealth.com on Facebook (facebook.com/ cancerhealthmag), Twitter (@cancerhealthmag) and Instagram (cancerhealth).
cancerhealth.com
SUMMER 2019
CancerHealth 5
CARE & TREATMENT
BY LIZ HIGHLEYMAN
Triple Combo for Pancreatic Cancer
TREATING CANCER ANYWHERE Following last fall’s debut of Vitrakvi (larotrectinib)—the first medication developed to treat cancer with a specific genetic mutation anywhere in the body—the Food and Drug Administration is expected to make a decision about approval of the next site-agnostic treatment in August. Like Vitrakvi, entrectinib works against all types of cancer with rare mutations known as TRK fusions, but it is also active against ROS1 fusions, which play a role in lung cancer. At the American Association for Cancer Research annual meeting in April, Robert Doebele, MD, PhD, of the University of Colorado at Aurora, presented results from a combined analysis of 10 non-small-cell lung cancer patients with TRK fusions in three clinical trials. The overall response rate was 70%, including one complete response. Four of the six people with cancer that had spread to the brain saw improvement there. The median duration of response and the overall survival rate cannot yet be determined because a majority of participants are still alive and responding.
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A three-pronged approach could offer hope for people with hardto-treat advanced pancreatic cancer, researchers reported at the American Association for Cancer Research annual meeting. The regimen includes an experimental CD40-targeted antibody dubbed APX005M, which stimulates T-cell activity against tumors, plus the checkpoint inhibitor Opdivo (nivolumab) and the chemotherapy drugs gemcitabine and Abraxane (nab-paclitaxel). In a small Phase Ib study, two thirds of evaluable participants experienced tumor shrinkage— including some long-lasting responses—supporting further testing in a larger trial, now under way at seven Parker Institute for Cancer Immunotherapy sites. “The idea is to attack the cancer from different angles,” says lead study author Robert Vonderheide, MD, of the Abramson Cancer Center at the University of Pennsylvania. “Although the results are early, we see encouraging signs that antiCD40 immunotherapy, checkpoint inhibition and chemotherapy in combination could be an effective new approach to treat patients with metastatic pancreatic cancer.”
Therapy for HPV Cancers Surgery for A new type of immunotherapy shows promising activity against cancers caused by human papillomavirus (HPV), including cervical, anal and oral cancers. Bintrafusp (aka M7824) is a bifunctional fusion protein that combines a receptor for TGF-beta, which promotes tumor growth, with an antibody that targets the PD-L1 checkpoint protein. Thus, this hybrid molecule targets two pathways tumors can use to evade the immune system. Bintrafusp shrank tumors in about a third of people with advanced HPV-positive cancers in an early study. Two women with cervical cancer had complete tumor regression and remain on treatment. The one-year survival rate was 62%. Julius Strauss, MD, of the National Cancer Institute, and colleagues concluded that bintrafusp “shows encouraging clinical efficacy” in people with HPV-positive cancers. A larger Phase II trial is now under way.
ALL IMAGES: ISTOCK
IMMUNOTHERAPY FOR PEOPLE WITH HIV As people with HIV live longer thanks to effective antiretroviral therapy, non-AIDS cancers have become a major concern. But HIV-positive people are often excluded from clinical trials of new cancer treatments. Michael Cook, MD, and Chul Kim, MD, PhD, of Georgetown University in Washington, DC, searched the PubMed database and conference abstracts and identified 73 HIV-positive people who used checkpoint inhibitors such as Keytruda (pembrolizumab) or Opdivo (nivolumab). Overall response rates were 30% for people with non-small-cell lung cancer and 27% for those with melanoma, similar to rates seen in people without HIV. Checkpoint inhibitors were generally well tolerated. Most people with undetectable HIV maintained viral suppression, and five of the six with detectable HIV before treatment saw a decrease in their viral load. “There are signals in this analysis and other studies that suggest these new cancer drugs may restore an immune response against HIV in patients whose immune system is exhausted by its long fight with HIV,” says Kim. Learn more about the latest treatments: cancerhealth.com/treatment
Metastatic Breast Cancer Women with breast cancer may benefit from surgery even if they are diagnosed at the most advanced stage of the disease. Unlike women with early cancer confined to the breast, those with metastatic breast cancer traditionally do not undergo surgery. But removal of the primary breast tumor may be warranted in women with HER2-positive tumors who respond well to targeted therapies like Herceptin (trastuzumab). Ross Mudgway, of the University of California Riverside School of Medicine, and colleagues conducted a retrospective study of more than 3,000 women with HER2-positive Stage IV breast cancer. They found that those who underwent surgery had a higher overall survival rate than those who were not offered or opted out of surgery—a 44% reduction in the risk of death. They also found that Black women and those with Medicaid or no insurance were less likely to undergo surgery— and more likely to die—than white women and those with private insurance or Medicare. But numerous factors come into play when deciding on surgery, including coexisting health conditions and the impact of a major operation on quality of life. “The decision to undergo breast surgery, especially a mastectomy, can often be life-changing, as it affects both physical and emotional health,” Mudgway said. “The patient’s own feelings about whether or not she wishes to have surgery should be considered.”
cancerhealth.com
SUMMER 2019
CancerHealth 7
VOICES
BY ROBIN MCGEE
I Thought I Was Cured
Robin McGee, PhD, 57, a clinical psychologist and patient advocate, lives in Nova Scotia with her spouse. Her blog, The Cancer Olympics, is featured on CancerHealth.com. formulary to cover FOLFOX. We were successful, but it was too late for me. However, I am proud to say our advocacy helped over 1,000 Nova Scotians access the best chance for a cure. I recounted the story of my fight for survival and medical justice in my book, The Cancer Olympics, which I am chuffed to say has won more than seven literary awards. My experience gave me the advocacy bug. I have served on several professional working groups aimed at improving cancer care, produced informational videos, joined Patients for Patient Safety Canada, done fundraising and generally raised hell on Twitter about the need for the patient’s voice in health care. In one of my proudest moments, the governor general of Canada decorated me with a medal for these efforts. When my cancer returned, my light dimmed, but it did not go out. I recently gave a talk to national health care leaders and shared my story about having a surgery canceled because a hospital fax machine ran out of ink; as a result, some hospitals are now replacing their obsolete and unreliable fax machines. Every day, I do something to combat cancer—support a
8 CancerHealth SUMMER 2019 cancerhealth.com
Robin McGee, PhD, with her book, The Cancer Olympics
survivor, write an article, do a speaking engagement. I fight for my vision of a world in which providers and patients engage with one another to advance our common cause. People ask why I do it. “Shouldn’t you be resting?” they query. I do it because it gives meaning to my suffering and death. I want no one else to undergo what I have. Even one saved patient, even one enlightened doctor is worth it. Cancer may take me out, but I will go down swinging. ■
COURTESY OF ROBIN MCGEE
I THOUGHT I WAS CURED. Eight years of remission after Stage III colorectal cancer. I went back to work, did a daily fitness routine and happily traveled. But in 2017, a pelvic recurrence went undetected by a distracted radiologist, and the result was devastating. The tumor was 2 centimeters when it was missed but 9 centimeters when it was finally revealed. What followed was months of brutal chemo infusions, a major debulking surgery, debilitating complications and more chemo. Sadly, during surgery, cancer cells were found deep in my pelvic sidewall—a condition that is inoperable and invariably fatal. So I do not know how long I have. But I am determined to continue on as a patient advocate for as long as I am given. In 2010, I was diagnosed very late because of gross medical error—none of the four doctors I saw, including a general surgeon, believed someone under 50 could get colorectal cancer. Ultimately, they were disciplined for egregious negligence. Once I entered treatment, I was horrified to learn that my province did not authorize the best-practice regimen for my cancer, the combination chemotherapy infusion known as FOLFOX. Instead, I was given the oral chemotherapy Xeloda (capecitabine). My community and I lobbied to extend the
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VOICES
BY HILARY SALTZMAN
Husband, Caregiver, Hero
Hilary Saltzman is a cholangiocarcinoma cancer survivor who lives in Austin with her husband and two children. The author with her husband, Charles, on the Outer Banks of North Carolina
keep yourself from falling in after her? I don’t know how my husband manages to keep his composure when these scenarios occur, yet he does so with extreme grace. His refusal to believe the stories I tell him, which are based in fear, is one of his greatest gifts. He could be short with me because, you know, he has a meeting in four minutes (which was actually the case when I called). He could unleash his own fears and escalate things, making us both feel worse. He could shut down and be unavailable. Instead, he conveyed his love, total devotion and belief that we will be OK. Then he had to hang up the phone, banish the image of his crying wife in a hospital gown 165 miles away and walk into a meeting like his entire future wasn’t hanging in the balance.
10 CancerHealth SUMMER 2019 cancerhealth.com
To all you spouses, partners and parents living with cancer patients: You are my heroes. No one, including me, knows how difficult it is to walk in your shoes. There are so many emotional landmines to navigate and you never know when one is going to blow up in your face. It’s a terrible reality of cancer. I am so very grateful to my husband for being my partner. He didn’t sign up for this, and we didn’t ever see ourselves in this scenario, but man, does my man shine. ■ This article originally appeared on I Had Cancer (IHadCancer.com), a cancer survivorship network that provides members with the ability to share personal experiences before, during and after cancer with others who really understand. It is adapted with permission.
COURTESY OF HILARY SALTZMAN
MY HUSBAND, CHARLES, knows I am not a doctor but sometimes like to play one. Waiting for my CT scan, I called him at work to share that I’d read some older pathology reports and thought there was something we had missed on earlier reads. He calmly told me it wasn’t a great idea to extrapolate conclusions from reports I’m not so great at interpreting. At this point, I was crying and coming unhinged. He let me be scared but refused to be scared with me. After getting our kids off to school that morning, Charles drove to work, and I drove to Houston for scans. All day, he carried the anxiety that scans trigger, hoping I would drive safely and not be lonely or overwhelmed and praying the news wouldn’t be awful. On top of all that, he had the stress of his daily job. Then his wife calls, whispering into the phone and crying, wanting reassurance that things will be all right even though she has “facts” telling her otherwise. Here’s the important thing I want you to know: There are many things my husband could have said to me to make this situation worse and so few things that could have made it better. How do you help the person you love while she is sinking into the dark abyss of her own mind? How do you
BY ROBERT P. GAYNES
VOICES
The Power of the Group
COURTESY OF ROBERT P. GAYNES
Robert P. Gaynes, MD, is an infectious disease specialist at Emory University School of Medicine in Atlanta. DURING MY MEDICAL training, I knew about support groups and even referred patients to them. But I had never been to one until 1995, when my wife’s diagnosis—widely metastatic breast cancer— at age 44 left us reeling. At the first meeting, she told her story. Afterward, she said to me, “I don’t know if this is for me.” But her oncologist sagely suggested she attend another meeting where she would not be the center of attention. When we did, her comfort level increased. We attended for four and a half years. With friends, she put up a brave front, acting as normal as possible while raising two children. But friends often disappointed her, either awkwardly dodging the subject of cancer or just disappearing. There was no such avoidance at the meetings, which she eventually called “my hour and a half of reality each week.” The tone could be light and positive when a member went into remission, serious when a new member arrived, heartbroken when one died. One member helped my wife deal with chemotherapyinduced hair loss, for which she remained forever grateful. The group always improved her psychological well-being. My For more first-person stories: cancerhealth.com/stories
Robert and Frances Gaynes
attendance gave me a rare perspective on the group’s value that informed my patient care— but not one I have ever shared. I recently corresponded with the kind, thoughtful psychologist who led the group. She recalled that my wife seldom grieved her own situation but instead offered warm support to others or visited people who weren’t doing well. One interaction stands out. Doris, 27, had inflammatory breast cancer, an often deadly form of the disease. She was a member of the LGBT community, a former Marine who drove a truck. But this strong,
resourceful woman was utterly devastated, and her supportive partner was at wits’ end. Doris sat on the floor sobbing, quietly but uncontrollably, for the entire meeting. At the end, when everyone else got up to put on their coats, I saw my wife wordlessly walk across the room, cup her hands around Doris’s hands, look into her eyes and say, “It’s going to be all right.” Instantly, Doris’s face relaxed. She stopped crying. Her entire demeanor changed. It was unforgettable, a magnanimous measure of support that only someone in my wife’s place could have performed. From that moment on, they were bonded. They would meet for coffee and visit each other if one was in the hospital. Doris opened up to the group, sharing her strength and wonderful humor; when she knew her treatment options were exhausted, she and her partner came to say goodbye. If there was a dry eye in the place, I didn’t see it. About a year after Doris died, my wife passed away. According to the psychologist, nothing hit the group as hard. They even renamed the group in her honor. That was 20 years ago. I thought it was time that I let people know how powerful support groups can be. ■
cancerhealth.com
SUMMER 2019
CancerHealth 11
BASICS
BY PIPPA WYSONG
Preserving Fertility
Cancer and its treatment may affect fertility, but you can often take steps before starting therapy to keep your reproductive options open. future—or you’re not sure—talk to your care team about possible options before starting treatment. Likewise, parents can ask about options for their children: • Could the treatment cause or increase the risk of infertility? • Are there other established treatments that are less likely to lead to fertility problems? • What are some fertility preservation options? • Can a fertility specialist become part of the cancer care team? Treatment can sometimes be adjusted to preserve fertility. For example, shielding may be used to protect the ovaries or testicles from radiation. In some cases, the ovaries can be surgically moved out of the way before radiation therapy involving the abdomen or pelvis. For many people, freezing eggs or sperm for later use may be an option. Those with partners may choose in vitro fertilization and freezing the embryos. Collecting and freezing undeveloped ovarian or testicular tissue may be possible for children undergoing cancer treatment before puberty. For some,
12 CancerHealth SUMMER 2019 cancerhealth.com
adoption may be an option. A growing number of cancer centers have reproductive endocrinologists and others who specialize in fertility issues for cancer patients. But efforts to preserve fertility must be undertaken early, before potentially irreversible damage occurs. Loss of fertility can be an upsetting consequence of cancer treatment. Many people want to have biological children, and being able to do so may be part of their sense of identity and purpose. While the possibility of infertility may be overwhelming, it’s important to discuss this up front with your care team. You may also benefit from talking with a counselor or attending a support group with others facing the same concerns. (For a story of fertility after cancer, see “And Then There Were Three,” page 32.) ■ Find out more about fertility: cancerhealth.com/fertility
ISTOCK
LOSS OF FERTILITY IS A MAJOR concern for many people diagnosed with cancer. Some types of cancer and forms of treatment can impair a woman’s ability to get pregnant and give birth or a man’s ability to father children. It is often possible to preserve fertility, but advance planning is important. Cancers of the reproductive system have the most direct effect on fertility. Sometimes it is necessary to remove reproductive organs such as the uterus, ovaries, prostate or testicles in order to treat or cure cancer. People who have only one ovary or testicle removed can often still produce children. Radiation and some chemotherapy can harm the reproductive organs and damage the genetic material in eggs, sperm and immature reproductive tissue in children. Depending on the intensity and duration of treatment, these changes may be temporary or permanent. Many people with breast, ovarian or prostate cancer receive medications to block hormones that promote cancer growth. Hormone therapy can disrupt the menstrual cycle in women and stop sperm production in men. However, its effects are often reversible after discontinuing treatment. If you think you may want to have biological children in the
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DIARY
AS TOLD TO LESLIE GOLDMAN
A Breast Cancer Diary
Angela “Jersi” Baker, 48, of Charlotte, North Carolina, has found a new life as a model promoting metastatic breast cancer awareness and helping underserved women.
At age 32, I saw my general doctor for my annual checkup. As she examined my left breast, she grew concerned and referred me for my first mammogram. I went a week later and had a biopsy the same day—my mom was with me. That night, the doctor called to tell me I had Stage 0 breast cancer, aka ductal carcinoma in situ. I was a single mom to an 11-year-old boy, Jakai, and had a full-time job as a shipping manager. My doctor was extremely optimistic; the cancer hadn’t spread, and, with treatment, I’d probably never have to face this disease again. Tests showed that it was HER2 negative and estrogen receptor positive. I sought opinions from two breast surgeons, opting for a unilateral mastectomy along with immediate reconstruction. I had surgery on October 14, my mother’s birthday. Afterward, I took tamoxifen for five years, to keep the cancer from recurring.
October 2008 No more tamoxifen! I celebrated five years cancerfree with coworkers, who surprised me with a cake with purple icing, the color of cancer awareness.
Summer 2010 A small, flesh-colored bump appeared on the surface of my left breast. It wasn’t irritated or discolored. Just a pimple, I thought. I waited for my routine follow-up with my breast surgeon a few months later. She measured it and took pictures, then said, “I want to remove it.” The nodule was cancerous, still Stage 0, and she assured me she’d gotten it all—no chemo or radiation needed.
November 2011
A nagging cold with weird whistling noises sent
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me to urgent care, where they took an X-ray for suspected bronchitis. But they called me the next day to say it showed an abnormality. When my mom and I visited my oncologist, he had a sad look on his face as he uttered the worst: “Your cancer has returned, and it’s Stage IV metastatic breast cancer.” The cancer had spread to my chest wall, spine and head. There was no cure. I would need to be on some treatment for the rest of my life, and my life expectancy was five years. The doctor outlined his plan of action: Faslodex (fulvestrant), an estrogen receptor downregulator, plus 24 rounds of radiation. We needed to start immediately. I continued to work and tried to keep life as normal as possible.
February 2013
I felt like I was emotionally crumbling. I took time off work to focus on me, but I didn’t want to stay at home and be depressed. My uncle didn’t have a driver’s license and asked me to help him get around. I was happy to help. I even handed out cards and gave rides to people for a small fee.
September 2013
A woman with breast cancer contacted me. She needed help getting to appointments but didn’t have money. “That’s OK,” I said. We spent five hours together, visiting three different doctors. We talked; we prayed. A few weeks later, when she called back, it hit me: This is what I’m supposed to do. That eventually led to my nonprofit, Angel in Disguise, Inc, which provides free transportation to underserved and uninsured people with cancer in Charlotte, North Carolina. We drive them to and from doctor appointments and treatment and medicine pickup and run light errands.
(SNAPSHOTS) COURTESY OF JERSI BAKER/JAKAI BAKER; (PAPER PIECES) ISTOCK
September 2003
Breast cancer is classified according to the kind of receptors it expresses. A majority of breast tumors carry estrogen receptors (ER positive). Others express another receptor called HER2 (human epidermal growth factor receptor 2). Triple-negative breast cancer doesn’t express any of these receptors and is harder to treat.
From left: modeling AnaOno lingerie in Charlotte, North Carolina; with the Angels in Disguise truck; at New York Fashion Week 2018
Ductal carcinoma in situ (DCIS): This noninvasive type of breast cancer originates in the milk ducts and can become invasive cancer.
May 2015
Metastatic breast cancer: Also called Stage IV, this breast cancer has spread to other parts of the body, often the lungs, brain or bones.
August 2016
Tamoxifen: This selective estrogen receptor modulator is often used after hormone-receptor-positive breast cancer surgery, to reduce the risk of recurrence.
I modeled for AnaOno, a lingerie company for women affected by breast cancer, started by a survivor.
On stage again! This time, I was invited to join the cast of My 2nd Act: Survivor Stories from the Stage, sharing our rebirth in a live stage show.
October 2016
After years of deliberation, I had my breast implant removed. It was often painful and always itchy, and I disliked the fact that while my right breast was showing natural signs of aging, my implant remained high.
February 2017 I walked in my first New York Fashion Week, in the AnaOno x #Cancerland show, wearing red lingerie. On the catwalk were other survivors and previvors (women at high risk for breast cancer)—none of us were models, just everyday women.
April 2017
More projects to raise awareness! I had my body painted for an underwater photo shoot.
February 2018
I participated in the Grace project, in which 800 women were photographed revealing our mastectomy scars and living in our power. For more on metastatic breast cancer: cancerhealth.com/mbc
September 2018 Angel in Disguise’s car, a red Pathfinder SUV, died. We’re using my personal car but searching for Go Fund Me help to buy a new or used SUV.
Today My treatment plan includes Faslodex shots every month; Xgeva (denosumab) shots every month to help with bone strength; and an oral medication called Ibrance (palbociclib), which I take for 21 days at a time. I really dislike when people tell me, “Keep up the fight.” I’m not in a fight; I am winning. Every day I wake up, I am winning. I may look happy, smiling and shining, but the fear that cancer will consume me is real. Still, my life is extraordinarily full. Jackai is now 27. Having this disease forces me to live life to its fullest, every day. Life is for living. I want to make the impossible possible. ■
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“I DON’T HAVE ‘QUIT’ IN ME” A long and successful battle with melanoma has left Dan Engel a new and different man. BY CHRISTINA FRANK PHOTOGRAPHY BY ARI MICHELSON
D
AN ENGEL WILL BE THE FIRST TO TELL you he’s pretty much incapable of self-pity. “It’s not part of my genetic makeup,” he says. “I just don’t have ‘quit’ in me.” And it’s a good thing too, as that attitude helped get him through what has been, by any measure, a grueling fight against melanoma. After his initial diagnosis in 1998, Engel experienced five recurrences and underwent 10 operations, plus radiation and treatment in six clinical trials, often with drug combinations with horrendous side effects. Twenty-one years later, at age 57, he is considered cured. He is also a very different person. He’s glad about that.
Dan Engel is driven to help others struggling with cancer. He knows how lonely it can be.
A SPOT ON HIS SCALP As with many cancer stories, it all started on what promised to be an ordinary day. It was November 1998. Engel was playing with his 1-year-old daughter at his home in Southern California. He’d just gotten a short haircut, and his wife noticed a spot on his scalp. He made an appointment with his dermatologist, who biopsied the lesion and called two days later. “You know when the doctor calls you himself, the news is not good,” says Engel. He left the office that day with a diagnosis of Stage II melanoma and a referral to the John Wayne Cancer Institute (JWCI) in Santa Monica. His first surgery— removal of the lesion and two lymph nodes, then a skin graft—lasted six hours. The post-surgery pathology report revealed cancer had spread to more lymph nodes; more surgery. His cancer was now Stage III and carried a 50% percent chance of recurring within five years.
YOU KNOW WHEN T HIMSELF, THE NE
Stage IV. Back to surgery (five hours), radiation (several rounds) and a new clinical trial for a multipeptide vaccine. Even that didn’t discourage the cancer. In 2005, Dan entered a biochemotherapy trial. It combined three types of chemotherapy with two drugs (interleukin-2, or IL-2, and interferon alfa-2b) that utilized a then-new approach, immunotherapy, to help the immune system fight cancer. The side effects were nearly intolerable. “My body blew up like a balloon, my skin turned lobster red and I had nonstop diarrhea,” says Engel. Still, the tumors remained. His doctor told him, for the first time, that he faced a terminal prognosis. “It was LET THE TRIALS BEGIN emotionally devastating, a huge punch in the gut,” Engel The next step was to enroll in a clinical trial at JWCI for recalls. But he told the doctor he didn’t want to quit. After several more recurrences—including one in the experimental vaccine CancerVax. Engel got regular injections over nearly five years. In 2004, at the end of which he could actually feel the tumors pushing against the trial, his final scans showed no evidence of disease the skin—and more surgeries, Engel entered yet another (NED). Says Engel, “As far as I was concerned, I was clinical trial, this time involving IL-2 and another imcancer-free.” But around six months later, he felt a lump munotherapy called GM-CSF. The cancer came back, so on his neck while adjusting his iPod earbuds. Tests he enrolled in his fifth trial, for carboplatin/paclitaxel confirmed new tumors, including in a salivary (parotid) along with Nexavar (sorafenib), a targeted therapy apgland and in more lymph nodes. His cancer was now proved to treat kidney and liver cancer. Three months later, a scan found eight tumors. Next up was a trial for an experimental immunotherapy drug called ipilimumab. Four rounds of “ipi,” as he calls it, Being a cancer patient on and off for so many years taught Engel dissolved the tumors, but they how to look out for himself. His advice: returned just a few months later. • Try to be the first surgery patient scheduled for the day. The Now the cancer had metastasized surgeon will be fresh, and you’ll avoid the anxiety of waiting. to his brain. He underwent • No matter how frustrated you get, be kind to all the staff. They, gamma-knife surgery, a highly in turn, will be kind to you. targeted form of radiation, to shrink the brain tumor. • Keep copies of all pathology reports, scans, blood work, clinical Finally, things started to look trial consent forms and documents related to your health history, up. Engel resumed the ipi trial; and make sure your doctor can access them easily. after the first two doses, scans • Be a strong advocate for yourself. Don’t accept a doctor’s opinshowed no evidence of disease. ions if your gut tells you that you need more tests or that something It was 2007. For the next six and is wrong. You know your body best. a half years, he received quarterly maintenance infusions. In 2014,
DAN ENGEL’S WORDS OF WISDOM
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THE DOCTOR CALLS YOU EWS IS NOT GOOD. his doctor told him he no longer needed scans. “I asked him if I was cured,” recalls Engel. “He looked me in the eye and said ‘Yes.’” He’s been NED ever since. That drug, ipilimumab, approved by the Food and Drug Administration under the brand name Yervoy in 2011, was the first new treatment for advanced melanoma in 13 years. Now, there are a dozen (see “A Revolution in Melanoma Treatment,” right). In the year 2000, the one-year survival rate for people with Stage IV melanoma was 25%. Now it’s 75%. AFTER A CURE, A SHIFT IN VALUES “A self-important investment banker.” That’s Engel’s description of who he was before his initial diagnosis. He still works in finance, but his values and priorities are very different now. One light bulb moment occurred in 2004, when he and his wife watched a TV segment about The Miracle League—a baseball league made up of children and adults with mental and physical challenges. He became actively involved and eventually started a chapter in San Diego. Opening day was in 2007, two weeks after Engel was declared NED after the second ipi trial. He still devotes between two and 10 hours a week to the league. “I’m so passionate about it, I will do it until I die,” says Engel. “It gave me meaning during my treatments, and I believe it was part of what saved me.” Engel also considers himself blessed to have met his current wife, Robin. Unfortunately, his first marriage did not survive the strain of his illness on their relationship—which is not uncommon— and the pair separated in 2012. In 2013, Engel met Robin on an online dating site. The two married in 2016. Engel is driven to help others struggling with cancer. He knows how lonely it can be. “When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who’d been through it,” he says. “I wanted to know about side effects, life during treatment, state of mind, everything.” In 2018, he launched Patient True Talk (PatientTrueTalk.com), a free online platform that matches people living with cancer to people who have survived the same, or a similar, diagnosis and lets them connect privately and securely. His mission: to help fill the void he felt for the next generation of people fighting cancer. Between his devotion to The Miracle League and his investment in Patient True Talk, Engel is not shy about saying he feels he was meant to change the world. As he puts it, “You don’t get six chances at life unless it’s for a good reason.” ■ Get the latest on melanoma: cancerhealth.com/melanoma
A REVOLUTION IN MELANOMA TREATMENT In its early stages, melanoma is usually treated with surgery, sometimes followed by radiation. For later-stage disease, major advances have been made over the last decade. Immunotherapy. Checkpoint inhibitor drugs work by boosting immune cell activity. They include Keytruda (pembrolizumab), Opdivo (nivolumab) and Yervoy (ipilimumab). Interferon-alfa, interleukin-2 and the Imlygic (T-VEC) cancer vaccine may also be used. Targeted therapies. About half of all melanomas have a mutation in the BRAF gene, which makes them susceptible to targeted therapy drugs. Oral BRAF inhibitors include Braftovi (encorafenib), Tafinlar (dabrafenib) and Zelboraf (vemurafenib). Other drugs, including Cotellic (cobimetinib), Mekinist (trametenib) and Mektovi (binimetininb), target MEK, a protein involved in cancer cell growth. BRAF and MEK inhibitors are usually used in combination. Also, a few melanomas have changes in the KIT gene and may be candidates for treatment with Gleevec (imatinib) and Tasigna (nilotinib), or they may have NTRK fusions susceptible to Vitrakvi (larotrectinib). While chemotherapy can help some people with advanced melanoma, other treatments are usually tried first. Dacarbazine and temozolomide are the chemotherapy drugs used most often, either by themselves or combined with other medications. Some doctors may recommend biochemotherapy, a combination of chemotherapy and interleukin-2 or interferon.
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Sleep
Solutions
These safe, effective nondrug approaches can help you sleep soundly again. BY BOB BARNETT
C
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HEMOTHERAPY AND RADIATION saved Timothy Moravits’s life. But it was the dedicated intervention of sleep specialists that gave him the kind of life he’d always wanted to live. “I’m peppier, less grumpy, more alert and more focused,” says Moravits, 60 (see “Getting Back in the Boat,” on page 23.) Restorative sleep, the kind during which one sleeps soundly for seven or eight hours and wakes up refreshed, is a rare and precious commodity for many people with cancer. Both cancer and many of its treatments increase inflammatory chemicals that disrupt the body’s natural sleep/wake cycle, or circadian rhythm. “Up to 60% of patients with cancer will have a sleep complaint, and these sometimes last five or 10 years into survivorship,” says Diwakar Balachandran, MD, medical director of the sleep center at MD Anderson Cancer Center in Houston, where Moravits was treated. Insomnia is the most common issue. It’s defined as trouble falling asleep or staying asleep—resulting in daytime discomfort (fatigue, irritability, trouble concentrating, anxiety)—that occurs at least three times a week for at least three months. “People expect side effects like losing your hair or nausea but not sleep problems,” says Rina Fox, PhD, MPH, a clinical health psychologist at Northwestern University Feinberg School of Medicine in Chicago. “I often encounter people who have finished treatment and were ready to go back to normal, but normal isn’t there—because of sleep.” It’s a vicious cycle. Going in for chemo, you don’t sleep well the night before, and then you find yourself napping during the day, so you have trouble getting back to sleep that night. Now you’re tired during the day, perhaps apathetic and a little depressed, so it’s not easy to do things that help you recover mental and physical health faster, such as eating well, seeing friends and taking walks. A temporary sleep problem becomes chronic. That may impair how you feel, recover and even respond to treatment. In one study of people with metastatic colorectal cancer, those who didn’t have a regular circadian rhythm were five times more likely to die within
five years. Says Balachandran, “Sleep disturbances may be carcinogenic.” Sleeping pills are not the answer. “If you talk to your oncologist about sleep problems, you will likely get a prescription for Ambien,” says Balachandran. These hypnotic sedatives are not effective long-term solutions, studies show, and they contribute to falls and driving accidents and may increase cancer risk. “I don’t like the effect they have on me,” says Shabana Mir, a professor of anthropology in Chicago who was treated for breast cancer twice, in 2009 and again when it recurred in 2015. “They don’t stabilize my sleep, not even on a temporary basis.” Says Sonia Ancoli-Israel, PhD, an emeritus professor of psychiatry and medicine at the University of California, San Diego, who’s been studying sleep and cancer for 25 years, “No supplements, including melatonin, work effectively for insomnia.” The good news: Effective, noninvasive, safe, affordable nondrug ways to protect your sleep before, during and after treatment are available.
THE CIRCADIAN DILEMMA—AND A BRIGHT SOLUTION
Our bodies thrive when we go to sleep and wake up at about the same time each day. Disturbing this circadian rhythm is a key way that cancer and its treatments contribute to fatigue, insomnia and depression. Chemotherapy is a common trigger. In a series of studies on women with Stage I, II or III breast cancer, Ancoli-Israel showed that circadian rhythms were impaired as soon as the first week of chemo and progressively worsened as treatment proceeded. A year later, the women’s sleep patterns had partially recovered but were still not as healthy as those of people without cancer. Fortunately, there’s a proven way to protect one’s circadian rhythm. It’s called bright light therapy. This approach uses small boxes that emit light that mimics bright sunlight. In a typical study, subjects spend 30 minutes each morning upon awaking sitting in front of the light box, often for 30 days or more. When bright light enters our eyes, it sends signals to the brain’s “master clock,” the suprachiasmatic nucleus, which controls the sleep/wake
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THE INSOMNIA CURE
While bright light therapy is effective at resetting one’s circadian rhythm, countering fatigue and reducing depression, it’s only part of the solution. To fully tackle insomnia, the best treatment, according to the American College of Physicians and other medical groups, is cognitive behavioral therapy for insomnia (CBT-I). One analysis of people with cancer, published in Sleep Medicine Reviews, looked at eight randomized clinical trials. CBT-I significantly increased the time spent in bed sleeping (versus tossing and turning). People spent less time falling asleep and less time waking up and staying awake. Self-reported insomnia scores decreased substantially. Six months later, the sleep benefits were still evident. CBT-I works by helping you make changes in sleep
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AS Y N A AS M LE P O E P F 60% O ANCER WITH C SLEEP HAVE MS. E PROBL
habits that sound easy but are really hard to achieve. These include:
• limiting daytime naps • avoiding stimulants, such as coffee, in the afternoon and avoiding alcohol in the evening • going to sleep only when you feel sleepy at night yet getting up at the same time each morning • not spending too much time in bed (seven hours of sleep out of eight hours in bed is better than seven hours of sleep out of nine hours in bed) • establishing a relaxing pre-bedtime ritual, such as reading making sure your bedroom is cool, dark and free of • distractions such as cellphones, tablets and TV. “It sounds easy to take your television out of your bedroom, but maybe when you’re going through cancer treatment, the TV in your bedroom gives you a lot of comfort,” says Northwestern’s Fox. “Maybe you Skype on the TV with your mom.” Working with a CBT-I therapist, she explains, “can help you find ways in which these changes will work best for you. It’s the gold standard for treating insomnia.” In a typical scenario, you meet once a week, for about six to eight weeks, with a CBT-I trained therapist. More affordable options such as group sessions or online programs/ apps (SHUTi, Sleepio, CBT-i Coach) can also help.
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cycle. In Ancoli-Israel’s studies, bright light therapy prevents circadian rhythm disruptions, reduces fatigue and prevents deterioration in quality of life, including the onset of depression. “Many cancer patients stop their treatments because the fatigue is so bad,” she says, “but there’s very little out there that can help. Bright light can.” Bright light therapy works well for people in treatment for many different cancers. In one study published in Cancer Medicine, for example, patients with multiple myeloma undergoing an autologous bone marrow stem cell transplant were bathed in bright light from a special standing lamp each morning in their hospital rooms. Depression rates dropped from 68% to 42%. “I believe everyone undergoing chemotherapy should use bright light therapy for 30 minutes every morning through every cycle,” says Ancoli-Israel. “For survivors, continue until you feel better.” She adds, “It’s non-UV light, so there’s no worry about harmful radiation, although you should always tell your medical team what you are doing.” In her studies, researchers use a commercially available product; reliable ones are available for as little as $100. If you don’t have one, sit next to a sunny window each morning. If you’re up to it and it’s a nice sunny day, sit outside or take a walk in the morning. Just don’t wear sunglasses for that half hour, so the light gets to your eyes.
“CBT-I reteaches you how to sleep,” says Ancoli-Israel. “It targets poor habits and helps you break them.” “It’s made a big difference,” says cancer survivor Mir, who enrolled in a CBT-I program overseen by Fox at Northwestern’s Center for Circadian and Sleep Medicine in the summer of 2018. Her treatment ended in 2015 (she’s in remission), but the insomnia lingered. “In the beginning, the CBT-I was rough, since you have to practice waking up at a certain time, no matter how much sleep you’ve gotten. The idea is to build up your ‘sleep hunger.’” But within a few weeks, after working on several habit changes, Mir was sleeping longer and more soundly and has maintained her good sleep habits ever since. “It’s so nice to be able to wake up and feel rested,” she says.
COURTESY OF TIMOTHY MORAVITS
HOW TO GET SLEEP HELP
Cancer and its treatment can interfere with sleep in different ways. You may have pain that keeps you up at night— and if you’re taking narcotics, these can interfere with sleep too. Hormonal therapy can affect sleep as can anxiety and depression. Platinum-based chemotherapy drugs can damage nerves and contribute to restless leg syndrome, another cause of insomnia. That’s why the first step is to discuss your symptoms with your care team. “Start with your oncologist,” says Ancoli-Israel. “If you don’t get an answer that satisfies you, ask for a referral to a sleep specialist—ideally someone who is board certified in sleep medicine.” You can improve the quality of your life, she says. “I’ve seen it happen many times.” ■ For more sleep solutions: cancerhealth.com/sleep
GETTING BACK IN THE BOAT Timothy Moravits, 60, and his wife Jeri, 56, love their retirement in Sarasota, Florida. But until recently, it hadn’t been much fun.
LAST YEAR, MORAVITS, NEWLY DIAGNOSED WITH HEAD AND neck cancer, kept falling asleep everywhere—including in waiting rooms and even in his oncologist’s office. “The doctor asked me, ‘Is he depressed?’” recalls Jeri. She told him that her husband was always falling asleep and that she thought maybe he had sleep apnea. Moravits had simultaneous chemotherapy and radiation treatment, and when his neck healed, he tackled his sleep problem. His doctor referred him for a sleep study—a noninvasive overnight exam in which an individual is monitored during sleep. MD Anderson Cancer Center in Houston, where he was treated, was the first comprehensive cancer center to open a sleep center a decade ago. Moravits was diagnosed with obstructive sleep apnea (OSA), a common, serious condition in which the airway temporarily closes up, stopping normal breathing briefly and repeatedly while sleeping. “It would happen to me 85 or 90 times an hour,” he recalls. “Plus, I was waking up eight to 10 times a night, getting up and roaming around before trying to get back to sleep.” OSA increases the risk of stroke, and—it Timothy Moravits and his wife, Jeri has recently been found—cancer. People with head and neck cancers are particularly prone to it, since both the tumor itself and radiation to the neck can obstruct breathing. Untreated, it’s associated with poorer outcomes and higher mortality in cancer patients. After the sleep study, Moravits went home with a continuous positive airway pressure therapy machine (CPAP), which ensures adequate oxygen during sleep. But the mask wasn’t comfortable; he didn’t use it. He went in for a consultation, and the sleep technician suggested that he just sit and hold the mask. When he dozed off (of course), the technician put the mask on him and turned on the machine; he wanted Moravits to know what good sleep feels like. He slept for four hours and woke up convinced. Moravits was eventually fitted with a bilevel positive airway pressure machine (BiPAP), which makes both inhaling and exhaling easier. That did the trick. “I still have some fatigue,” says Moravits, who has been cancerfree for six months, “but I now get seven or eight hours of quality sleep each night, and I feel great the next day. I can now go fishing all day. My hobby is remaking fishing poles. Jeri and I go out on the boat, go on walks together, play with our dogs—and we socialize more.” Getting the right amount of quality rest, he says, has changed both of their lives. “Sleep is more important than you think.”
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THE
MICROBIOM
Changing gut bacteria to improve treatment respo
BY LIZ HIGHLEYMAN
the gut microbiome—the ecosystem of bacteria and other microorganisms in the intestines— plays a key role in health conditions ranging from allergies to Alzheimer’s. And cancer is no exception: A growing body of evidence links the microbiome to disease progression, treatment response and side effects. The importance of the microbiome raises the possibility that altering intestinal bacteria—whether with a high-fiber diet, customized supplements or “poop capsules”—could help the immune system fight cancer and improve response to treatment. But beware: Recent research shows that off-the-shelf probiotic supplements containing live bacteria could actually make matters worse. Humans and their microorganisms have evolved in symbiosis for millions of years, and the trillions of microbes in our gut play a role in many physiological processes, including metabolism and immune response. Gut bacteria interact with the immune system to affect not only localized conditions, like inflammatory bowel disease, but also immune responses throughout the body. “The microbiome, by modulating immunity, can change tumor progression,” says Giorgio Trinchieri, MD, of the National Cancer Institute (NCI). One of the most exciting areas of research involves the influence of gut bacteria on immunotherapy, which helps
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the immune system recognize and attack cancer. At the American Association for Cancer Research (AACR) annual meeting in April, Trinchieri explained that the microbiome trains the immune cells that infiltrate tumors— a crucial aspect of response to immunotherapy. Some beneficial microbes release metabolic by-products— such as short-chain fatty acids when fiber is broken down—that enhance immune cell activity and suppress inflammation. In contrast, dysbiosis, which occurs when harmful bacteria take over, can lead to microbes leaking out of the gut and triggering inflammation. From the time of birth, various microbes cooperate or compete with one another for dominance. Many factors can affect the microbiome balance, including formula feeding instead of breast feeding, type of diet, use of antibiotics and even having a pet. In general, greater diversity of bacteria in the gut is associated with better health—and with better response to cancer treatment.
THE MICROBIOME AND CANCER THERAPY Recognition of the link between the microbiome and cancer treatment isn’t new. Several years ago, researchers first showed that among people undergoing stem cell transplants to treat blood cancers, those with less diverse gut bacteria had a higher risk of death and were more likely to develop graft-versus-host disease, a life-threatening
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XPERTS INCREASINGLY RECOGNIZE THAT
ME FRONTIER
onse may be the next frontier in immunotherapy.
complication in which the donor’s immune cells attack the recipient’s body. Adoptive cell therapies using selected or engineered cancer-fighting immune cells also work better in those with a healthy microbiome. In 2013, Trinchieri’s team reported that germ-free mice lacking a microbiome and those whose gut bacteria were killed off by antibiotics did not respond well to platinumbased chemotherapy. Similarly, a group led by Laurence Zitvogel, MD, PhD, of Gustave Roussy Cancer Center near Paris, showed that germ-free mice were resistant to the widely used chemotherapy drug cyclophosphamide. More recently, the focus has shifted to checkpoint inhibitor immunotherapy. CTLA-4 and PD-1 are immune checkpoints on T cells that tumors can exploit to turn off immune responses against them. Drugs that block CTLA-4, PD-1 or its binding partner, PD-L1, release the brakes and restore T-cell activity. This type of immunotherapy works very well for some individuals, but a majority do not benefit, and researchers are trying to determine why. In 2015, Zitvogel’s team showed that mice with gut bacteria in the genus Bacteroides responded better to the CTLA-4 checkpoint blocker Yervoy (ipilimumab). When germ-free mice got stool transplants from patients who responded well to Yervoy, the mice began responding too. Researchers at the University of Chicago, led by Thomas Gajewski, MD, PhD, likewise linked certain bacteria to
improved effectiveness of PD-L1 checkpoint blockers. When mice with melanoma were given supplements of Bifidobacterium (beneficial bacteria in fermented foods), T cells migrated to tumors and the cancer regressed. Two years later, three research teams extended this work to humans. Jennifer Wargo, MD, and her team at MD Anderson Cancer Center in Houston found that people with metastatic melanoma who had more diverse bacteria responded better to PD-1 checkpoint inhibitors, such as Keytruda (pembrolizumab) and Opdivo (nivolumab). In particular, Ruminococcaceae, Clostridiales and Faecalibacterium species were associated with better treatment response, while Bacteroidales species were linked to poorer response. People with a favorable gut microbiome had more active T cells in their tumors, which translated to longer progression-free survival. “Diversity of gut microbes matters, and composition also matters,” according to Wargo. In another study of people with advanced melanoma, Gajewski’s team also saw an association between gut bacteria and response to PD-1 checkpoint inhibitors. But here, people who responded well had more Bifidobacterium—as the researchers previously saw in mice. In the third study, Zitvogel’s group looked at the association between PD-1 checkpoint inhibitor response
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and gut microbes in people with advanced bladder, kidney or lung cancer. Stool analysis showed that responding patients had higher levels of Akkermansia muciniphila bacteria. A study presented at this year’s International Liver Congress showed a similar relationship for liver cancer. Greater gut bacteria diversity was associated with better response to Opdivo in people with hepatocellular carcinoma. The dominant types of bacteria also differed, with responders having more Burkholderiales species while nonresponders had more Aeromonadaceae bacteria. Together, these findings suggest that an individual’s microbe composition could potentially be used to predict who will respond to immunotherapy. “Profiling the gut microbiome of patients going on immunotherapy might give us insight into the likelihood of response,” Wargo says. “Gut biomarkers could be really useful in the era of precision medicine.”
If having too few types—or the wrong types—of bacteria in the gut is associated with cancer progression and poorer treatment response, one might think it would be easy to turn things around by fixing the microbiome. This potentially could be done by adding prebiotics (undigestible plant fiber that feeds good bacteria in the colon) or probiotics (foods or supplements that contain live beneficial bacteria) to the diet or by transplanting gut bacteria from responders. But it turns out things aren’t so simple. Observational studies have yielded clues about how to—or how not to—alter the microbiome to improve treatment response, but many questions remain unanswered. “There’s been incredible progress in understanding the microbiome since 1683”—when symbiotic microbes were first described—“but still not much more is known about how to prevent or correct problems,” says Trinchieri. Consider antibiotics, which can kill off both good and bad gut bacteria. Zitvogel’s team found that people who used antibiotics shortly before or during treatment did not respond as well to checkpoint inhibitors. Antibiotic recipients had both reduced progression-free survival and shorter overall survival.
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Top: Jennifer Wargo, MD (center), and her team at MD Anderson Cancer Center, including Christine Spencer, PhD (back row, third from right). Bottom: Giorgio Trinchieri, MD; Jennifer McQuade, MD
At a recent immune oncology symposium, David Pinato, MD, PhD, of Imperial College London, confirmed the detrimental effect of antibiotics. In a study of nearly 200 people with various types of cancer, those who received antibiotics within 30 days of starting therapy had poorer response to checkpoint inhibitors, worse disease progression and shorter survival. “As oncologists, we’re used to doling out antibiotics like opioids, but we need to consider the microbiome,” Ami Bhatt, MD, PhD, of Stanford University, said at the meeting. These findings suggest that people treated with immunotherapy should be cautious about using antibiotics. But that doesn’t mean using off-the-shelf probiotics to counter their effects is a good idea. For one thing, evidence to date doesn’t definitively answer the question of which microbes should be supplemented, as various research teams have found different bacteria to be associated with good response. “The different studies
(GROUP AND MCQUADE) COURTESY OF MD ANDERSON CANCER CENTER; (TRINCHIERI) LIZ HIGHLEYMAN
FEEDING THE MICROBIOME
that have identified bacterial response signatures don’t have a lot of overlap,” says Wargo. “What is the secret sauce?” At this year’s AACR meeting, Christine Spencer, PhD, formerly a member of Wargo’s team and now at the Parker Institute for Cancer Immunotherapy in San Francisco, reported that melanoma patients who used probiotics— just over 40% of the study population—had lower gut bacteria diversity and were 70% less likely to respond to PD-1 checkpoint inhibitors. The researchers suggested that probiotics could lessen bacterial diversity—and this diversity, more than specific strains, may be the key to good response. Many commercial products contain only one or a few bacteria species, which could reduce diversity. Some purveyors sell combination probiotics, but experts don’t yet know enough to say what’s the best mix. “Over-the-counter probiotics could actually lower your microbiome diversity and lower response to immunotherapy,” says Jennifer McQuade, MD, of the MD Anderson team. “So outside of a clinical trial with targeted supplements, we are definitely recommending against routine probiotic use.”
HEALTHY EATING TIPS While much remains to be learned about the optimal diet for people receiving treatment for cancer, experts offer the following advice: • Eat plenty of high-fiber foods, such as legumes (beans, lentils), vegetables (broccoli, kale), fruits (apples, berries, avocados), whole grains and nuts. • Limit consumption of red and processed meats and added sugar. • Don’t shy away from coffee and dark chocolate, which contain compounds that promote a diverse microbiome. • Include moderate amounts of fermented foods— such as yogurt, sauerkraut, kimchi and kombucha— that naturally contain beneficial bacteria. • Until the link between gut bacteria and immunotherapy is better understood, skip the probiotic supplements.
Stay up to date on the microbiome: cancerhealth.com/microbiome
Instead of supplements, experts—including AACR and the American Cancer Society—advise eating a healthy diet with plenty of plant-based foods and less meat, processed products and added sugar. In Spencer’s study, people who ate more whole grains, fruits and vegetables had more gut bacteria associated with favorable treatment response, while those who ate more sugar and processed meat had less beneficial bacteria. What’s more, people who ate a high-fiber diet were five times more likely to respond to checkpoint blockers than those who consumed little fiber. “The gut microbiome plays a big role in moderating the immune system, so the idea that we could potentially change the microbiome to improve response to immunotherapy treatment is really exciting,” Spencer says. “It’s likely the overall diet and dietary patterns that matter here. So eat your high-fiber foods—lots of different kinds and lots of them.”
THE MICROBIOME FUTURE Many studies are now under way to learn how to safely alter the microbiome to improve treatment response. One approach is fecal microbiota transplantation (FMT)—which is just what it sounds like, preparations made from the stool of healthy individuals administered via enema or oral capsules. In the studies described above, fecal transplants from responding patients to germ-free or antibiotic-treated mice led to the migration of T cells into tumors and slower cancer growth. Research in people with cancer is still in its early stages, but recent results from Trinchieri’s team and another group in Israel showed that people who received donated stool from good responders along with checkpoint blockers had increased T-cell activity and experienced tumor regression. Research now under way includes clinical trials in which participants receive standardized prepared meals or customized supplements. Both the MD Anderson and the University of Chicago groups are testing supplements containing selected bacteria linked to good response in their respective studies. And several companies are exploring this potentially lucrative field. “If we really want to think of food as medicine, then we need rigorously controlled studies to see if we can change outcomes with dietary interventions,” says McQuade. “We can’t change our genetics, but we can change our microbiome.” ■
cancerhealth.com
SUMMER 2019
CancerHealth 27
YOUR TEAM
BY KURT ULLMAN
Getting Your Life Back Anne Baldwin, OT/L, CHT, CLT, is an occupational therapist at the Cleveland Clinic in Ohio.
What is an OT? We are health professionals who address the individual as a whole, both mentally and physically. An OT identifies the challenges people are experiencing and helps them find ways to participate in what is meaningful to them as safely and independently as possible. OTs help you overcome obstacles to living the life you want. What kind of care do you provide for people with cancer? We start by evaluating and interviewing patients. This helps us understand the difficulties they are experiencing and develop the necessary interventions. An OT collaborates with the individual to set and prioritize treatment goals. We consider the stage of healing and the changes that can occur as patients progress through their cancer care regimen. We look at previous treatments they have received—for
example, whether there was recent surgery—and what additional treatments are expected. Fatigue is a symptom commonly experienced by people undergoing cancer care. I will discuss techniques that allow individuals to conserve energy and to develop work strategies that allow them to maximize productivity throughout the day. I may start someone on an energy-building routine, with exercises that gradually progress as tolerance allows. If you are experiencing increased pain, I may teach you specific exercises as well as self-massage techniques. I may also suggest adaptive equipment, such as an elongated shoehorn, mats that prevent slipping and kitchen gadgets that make it easier to open jars. An OT may also fabricate a brace to help with impairment of a patient’s arm or hand. An occupational therapist’s goal is to make an individual as independent as possible. This may include learning how to practice self-care, finding solutions to mobility issues and making adjustments to the
28 CancerHealth SUMMER 2019 cancerhealth.com
Anne Baldwin, OT/L, CHT, CLT
home environment so that it is safe and comfortable. We also help with issues navigating when you’re out and about. What is the most inspiring or hopeful part of your work? I am inspired by the people I meet and watching how they cope and work hard at healing. Witnessing this, along with the excitement they show when a skill is mastered or a goal is achieved, is very rewarding. I am fortunate to be a member of a dedicated team that is committed to those with whom we have the opportunity to work. Understanding the person living with cancer is key to providing the best care and outcomes. ■ Who’s on your team? cancerhealth.com/team
COURTESY OF CLEVELAND CLINIC
CANCER AND ITS TREATMENT can make it harder to perform many daily activities—whether at work, at home or during your leisure time—which can affect your quality of life. An occupational therapist (OT) helps you learn to work around these changes to live as full a life as possible.
BY MEAVE GALLAGHER
RESOURCES
Caregiver Resources CARE PARTNERS PLAY A VITAL ROLE IN THE LIVES OF PEOPLE with cancer, and they need support too. Here are some ways to take care of yourself while you’re caring for someone with cancer.
AMERICAN CANCER SOCIETY cancer.org Start with the interactive guide (cancer.org/treatment/caregivers .html) to find which resources, support programs and services can best help you. AMERICAN SOCIETY OF CLINICAL ONCOLOGY cancer.net The ASCO Answers guide to caregiving is available in English and Spanish and includes help for sharing responsibilities and being a care partner at home, in the hospital or long-distance.
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CANCERCARE cancercare.org Join an online support group. Those in the New York area can attend an in-person support group or community program. Care partners can also find video workshops and publications. CANCER EXPERIENCE REGISTRY cancerexperienceregistry.org This confidential program by the Cancer Support Community offers caregivers a place to share experiences, discuss issues and access free resources. CANCER SUPPORT COMMUNITY cancersupportcommunity.org CSC offers videos and written guides, some also in Spanish, Read about caring for caregivers: cancerhealth.com/caregivers
about helping loved ones communicate with their medical team, as well as firsthand advice.
Michigan State University—to help you overcome immediate stress and longer-term issues.
CARING.COM caring.com This site focuses on caring for seniors and offers guides to financial assistance, such as managing Medicare benefits and long-term care insurance, as well as tips on how caregivers can attend to their own needs.
LOTSA HELPING HANDS lotsahelpinghands.com Use this medical caregiving coordinating site to invite your community—neighbors, friends, family—to help with specific tasks and offer emotional support during times of need.
CARINGBRIDGE caringbridge.org Set up a private journal to easily share news with your loved ones and request the support you need from your community. CaringBridge also has a library of resources for care providers. FAMILY CAREGIVER ALLIANCE caregiver.org Get information, training and classes in audio, video and print from the Learning Center; the Caregiver Connect program links you to online and in-person support groups as well as other local resources. HELP FOR CANCER CAREGIVERS helpforcancercaregivers.org Make a personal care guide with this project—created by Anthem, CancerCare, Caregiver Action Network, Indiana University and
NATIONAL CANCER INSTITUTE cancer.gov NCI’s database has information to help you take care of both yourself and someone with cancer. Get phone, chat or email responses to your queries from its Cancer Information Services. NATIONAL CAREGIVERS LIBRARY caregiverslibrary.org The library’s articles, forms and guides to external resources are organized by category, which includes caregiving basics, emotional issues and medical care. NEXT STEP IN CARE nextstepincare.org The United Hospital Fund created NSC to train and support family caregivers. Its resources focus on easing transitions between home and care facilities as well as on the support family caregivers need in any setting.
cancerhealth.com
SUMMER 2019
CancerHealth 29
BY MEAVE GALLAGHER
Smarter Sun Protection WHEN THE SUN IS HIGH, IT’S MORE IMPORTANT THAN ever to practice sun safety. Wearing sunscreen protects against all skin cancers, including melanoma of the skin (see “I Don’t Have ‘Quit’ in Me,” page 16), the fifth most common cancer among adults. But casually slapping on the sunscreen once you get outside won’t do the trick. Here’s what will. Boost your sun protection factor (SPF). You may have heard that really high SPF sunscreens don’t make much difference, but a 2018 study by the American Academy of Dermatology found SPF 100–rated sunblock offers measurably more protection against ultraviolet (UV) rays than SPF 50. Of course, SPF 50 still protects against 98% of UVB light! Choose a sunscreen labeled “broad spectrum,” meaning it protects against both UVA and UVB rays, as well as “water resistant.” Use sunscreen right. People use less than half the amount they should, on average, so be generous. Apply your first coat 30 minutes before you go out, covering your skin from your scalp to the soles of your feet. Reapply at least every two hours, or right after working up a sweat or taking a swim. Cover up. A white T-shirt offers little protection, but dark clothes, like jeans, are almost total sun blockers. Some clothes come with an ultraviolet protection factor (UPF) rating, which is like SPF for clothing. A UPF 50 garment blocks the sun as effectively as a broad-spectrum SPF 50 sunscreen. Don’t forget your eyes! The American Academy of Ophthalmology advises wearing sunglasses labeled “100% UV protective” or “UV400.” “Polarized” lenses reduce glare but won’t protect your eyes unless they carry the UV label. Stay inside during peak hours. The sun is strongest between 10 a.m. and 2 p.m., so take a break in the shade. The water will still be warm after peak sun time! ■
30 CancerHealth SUMMER 2019 cancerhealth.com
10 SUN SAFETY TIPS 1
Wear broad-spectrum, waterresistant sunscreen of at least SPF 50 whenever you go out.
2
Apply sunscreen at least 30 minutes before going out, and reapply every two hours you spend outdoors.
3
Getting wet? When you dry off, reapply sunscreen.
4
Hand-apply cream or gel sunscreen first, then use sprays for easy reapplication.
5
Cover up with UPF-rated clothes, hats and swimwear.
6
Keep your eyes safe with 100% UV-protective sunglasses.
7
Hide out under a UPF-rated umbrella or beach tent.
8
Limit your sun exposure between 10 a.m. and 2 p.m.
9
Regularly examine your skin, and see a dermatologist annually.
10
Always use sunscreen outdoors, even on cloudy days.
Get more sun protection info: cancerhealth.com/sun
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HOW TO
BY MEAVE GALLAGHER
GOOD STUFF
SUMMER STYLE Cool products for a hot season
Not all sunscreen is created equal. Alba Botanica Baby Mineral Sunscreen ($6.86, 4 oz.) is SPF 50+, recommended by the Skin Cancer Foundation for active use and formulated for sensitive skin (babies aren’t the only ones who need extra care!), and its all-vegetarian ingredients aren’t tested on animals. The sunscreen is certified reef safe, so vacationers can snorkel among the coral without doing harm to the ecosystem.
Sisters Peg Feodoroff, Patty Goodhue-O’Brien and Claire Goodhue founded Spirited Sisters in 2005 to sell the stylish, dignified, practical clothing they wish had been available when Peg and Claire were receiving cancer treatment. The Healing Threads BMT Treatment Shirt ($39.99, sizes M to 6XL), which was codesigned and tested by people in treatment, is non– gender-specific and has multiple openings to allow you to receive a bone marrow transplant or chemotherapy treatment without feeling uncomfortable or overly exposed.
Take a break from the sun beneath the Copa Sun Blocking Beach Umbrella ($19.99). Its 6-foot canopy is Skin Cancer Foundation– recommended for its 50 ultraviolet protection factor (UPF; like SPF but for fabrics). The canopy tilts to maximize shade throughout the day. (For a chance to win this umbrella, see page 33.)
Protect your head from the sun’s harmful rays with a good hat, like the Coolibar Unisex Sport Cap ($39.50, sizes S/M to XXL). The fabric is rated 50 UPF, and the 3½-inch bill keeps the sun off your face while the internal band wicks away sweat.
Beach reading: The iconic Olivia Newton-John has been an advocate for the cancer community since her first breast cancer diagnosis in 1992. Now, after 50 years of working as an actress and musician, founding the Olivia NewtonJohn Cancer Research and Wellness Centre in 2008 and a second recurrence of the disease in 2018, she has finally written about her incredible life. In Don’t Stop Believin’ (Gallery Books, $28), she takes us from her Australian upbringing through the thrills of international stardom, detailing the many times cancer has touched her life and how her experiences made her into the fierce advocate she is today. Find more products to make life easier: cancerhealth.com/good-stuff
cancerhealth.com
SUMMER 2019
CancerHealth 31
LIFE WITH CANCER
BY ANNA STOESSINGER
And Then There Were Three…
Anna Stoessinger, who had her stomach and part of her esophagus removed to treat gastric cancer, has beaten the odds in more ways than one.
THE TITLE OF THIS SECTION of the magazine makes it sound like cancer might be a harmless sidekick, a casual shrug of the shoulder. “Well, that’s just life with cancer,” I imagine someone saying after meeting your cancer at a cocktail party. But once you have it, cancer stays with you—and the people you love— forever. In 2011, at age 36, I was diagnosed with gastric cancer. Suddenly, nothing mattered but my health—and being with the people I loved. My husband and I set about the difficult work of making sure I lived. I underwent a total gastrectomy (complete stomach removal) and partial removal of my esophagus and finished six cycles of chemotherapy. I lost most of my body weight and relearned how to eat. Even though I am “cured,” I still experience chronic nausea and (often daily) vomiting, pain, anemia and malnutrition. Despite this, I still love to eat. And I will still travel irrationally far distances to procure, for example, the perfect linzer cookie or Garrotxa, the sublime Catalan goat’s milk cheese. When I was newly diagnosed, my fear was omnipotent; it controlled everything. It nearly stopped my heart to learn I
might only live another three years; it nearly killed me waiting for test results to find out whether I’d live or die. But these days, cancer takes on different forms—gratitude, fatigue, disbelief, perspective—and this is why: In 2016, the same year I was declared “cured,” I gave birth to a healthy baby boy. My doctors had told me that my treatment would make having a child impossible. But we found a fertility doctor who guided us, and I spent months getting blood drawn two to three times a week. Twice, I gave myself injections to trigger ovulation. The second one worked. I got pregnant, and eight months later, Henry was born. So these days, when I think of “life with cancer,” I think about what would have happened if I hadn’t met this disease, the one I punched square in the face, the one that took me to my knees, the one that still plagues me with (often intense) discomfort. I think of it when my almost 3-year-old burrows his head under my arm and I feel his little body breathing in sync with
32 CancerHealth SUMMER 2019 cancerhealth.com
Anna Stoessinger, with her husband Keith, and their son, Henry
mine, or hear his uncontrollable laughter when my husband holds him upside down, or give myself completely to the folds of my husband’s arms as he holds Henry and me and kisses us both, over and over and over. I think of my disease every single time Henry asks the toddler’s defining question: “Why?” And that is because I’ve been given the gift of being here to respond to him, even when I don’t know the answer. ■ Find more first-person stories: cancerhealth.com/stories
COURTESY OF ANNA STOESSINGER
For Dr. A., without whom I would not have made it
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