A SMART+STRONG PUBLICATION CANCERHEALTH.COM SUMMER 2021 $3.99
CAN DO SPIRIT
TH E
Michael Whitley
C IN A N SID C E E: Clockwise from top:R H R London Gray, Benjamin A E Ball,CAdonis Porch and A IA LT Ervin EQRogers L H H
6 Travel Tips
H
Antitumor Viruses
IT E A Y LT
Melanoma Resources
A Colon Cancer Diary
U
Engineering a Recovery
Now Is the Time for Missed Checkups
O N C O LO GY F U N D P O RT F O L I O
When health insurance is not enough, HealthWell fills the gap. The HealthWell Foundation is a nationally recognized, independent non-profit organization, that serves as a safety net for underinsured Americans. Since 2003, we have awarded over $2.1 billion in medication copay and insurance premium assistance grants to more than 615,000 patients with chronic or life-altering diseases. Our vision is to ensure that no patient goes without health care because they cannot afford it. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses for essential treatments and medications. Are you living with cancer and need assistance with copayment or premium costs? HealthWell may be able to help. To learn more about our program and the oncology funds we cover, visit our Disease Funds page at https://bit.ly/3e0grbG.
www.HealthWellFoundation.org/disease-funds Website: www.HealthWellFoundation.org Facebook: Facebook.com/healthwellfoundation Instagram: @HealthWellFoundation Twitter: @HealthWellOrg Linkedin: healthwell-foundation
Acute Myeloid Leukemia B-Cell Lymphoma – Medicare Access Bladder and Urothelial Cancer – Medicare Access Bone Metastases – Medicare Access Breast Cancer – Medicare Access Cancer-Related Behavioral Health (Accepting phone applications only) Carcinoid Tumors and Associated Symptoms – Medicare Access Chemotherapy Induced Nausea or Vomiting – Medicare Access Chemotherapy Induced Neutropenia – Medicare Access Chronic Lymphocytic Leukemia Chronic Myeloid Leukemia – Medicare Access Colorectal Carcinoma – Medicare Access Cutaneous T-Cell Lymphoma Gastric Cancer – Medicare Access Glioblastoma Multiforme/Anaplastic Astrocytoma Head and Neck Cancer – Medicare Access Hepatocellular Carcinoma – Medicare Access Hodgkin’s Lymphoma Mantle Cell Lymphoma Melanoma – Medicare Access Multiple Myeloma – Medicare Access Myelodysplastic Syndromes – Medicare Access Non-Hodgkin’s Lymphoma – Medicare Access Non-Small Cell Lung Cancer Ovarian Cancer – Medicare Access Pancreatic Cancer – Medicare Access Prostate Cancer – Medicare Access Renal Cell Carcinoma – Medicare Access Small Cell Lung Cancer – Medicare Access Wilms’ Tumor
“I wanted to say thank you so much to the HealthWell Foundation for helping out with the funding of my medication. I have CLL and it was starting to cut off my trachea and esophagus making it difficult to breathe and eat. Medication was prescribed but is not affordable. Because of the medication you help provide, I won’t have to worry about CLL shutting my throat and leaving me feeling claustrophobic. Thank you, thank you!” John – Haw River, NC (HealthWell CLL Fund grant recipient)
CONTENTS
The Cancer He
E xclusively on
alth
Cancer Health.com Cancer Health Stories
Read the firstperson stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories
Basics
Whether you’re newly diagnosed or a long-term survivor, check out our Basics section on cancer treatment, managing side effects and much more. cancerhealth.com/basics
Science News
Learn about the latest treatment advances, cure research and conference news. cancerhealth.com/treatment
COVER: LARISSA PIERCE; (HEART SPEECH BUBBLE, IV TREATMENT) ISTOCK
Cancer Health Digital Scan the QR code (left) with your smartphone to check out the current issue of Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.
14 ENGINEERING HIS RECOVERY Michael Whitley has a can-do attitude that helps him navigate a complex path through metastatic kidney cancer. BY BOB BARNETT 18 THE CANCER HEALTH 25: BLACK LIVES MATTER These remarkable change makers are breaking down racial barriers to better cancer care. BY THE CANCER HEALTH STAFF 2 From the Editor Health Equity 4 Care & Treatment After COVID-19, getting cancer screenings back on track | FDA reconsiders some accelerated approvals | acupuncture for cancer pain | using viruses to kill tumors | new drug approvals 6 News Safer immunotherapy | top apps | after leukemia, Olympic swimming | myth buster: do biopsies spread cancer? | new guidelines for lung cancer screening 8 Voices Kelly Shanahan found a new way to live with metastastic breast cancer. 11 Basics Kidney cancer treatment
12 Diary How Native American artist Robert DesJarlait survived colon cancer 24 Life With Cancer Sonia Dolinger faced chronic lymphocytic leukemia with her family. 27 Your Team A respiratory therapist can help you breathe easier. 28 Good Stuff Enjoy summer with a helpful book and some delicious ice cream. 30 Resources The best melanoma websites 30 How To Travel safely with these tips. 33 Reader Survey Health equity
cancerhealth.com
SUMMER 2021
CancerHealth 1
FROM THE EDITOR
Cancer Health TM
EVERYONE WITH CANCER deserves state-of-the-art care and a chance to live the best life possible. Our cover subject, Michael Whitley (page 14), searched out a world-renowned expert to help him manage metastatic kidney cancer. Like many, he found a source of hope in new treatments. Between 1991 and 2018, cancer deaths in the United States fell by 31%. It’s a huge achievement, driven by healthier lifestyles, earlier detection and groundbreaking treatment advances. But deaths could fall by another 40% if proven interventions get to everyone, finds the American Cancer Society. Even the best medicine is only fully effective when people are screened regularly, diagnosed early and treated promptly. Death rates for certain cancers are higher for people who are Black, Latino/Hispanic, American Indian/Alaska Native, Asian/Pacific Islander, LGBTQ, low-income or rural or lack college degrees. Black Americans face the greatest disparities—a 14% higher death rate. That’s why the theme of our second annual Cancer Health 25 issue is Black Lives Matter. It features remarkable individuals fighting to break down racial barriers to cancer care (page 18). In this issue, as always, we celebrate personal stories. Kelly Shanahan, who is living with metastatic breast cancer, found a new identity after she could no longer practice medicine (page 8). Sonia Dolinger (page 24) found that her chronic lymphocytic
2 CancerHealth SUMMER 2021 cancerhealth.com
leukemia battle strengthened her entire family. Native American artist Robert DesJarlait (“A Colon Cancer Diary,” page 12) dug deep into healing rituals to thrive again. We invite you to get smart about Care & Treatment (page 4) and News (page 6), learn what a respiratory therapist does (page 28) and discover melanoma Resources (page 30). Pamper yourself too, with soothing, healing Good Stuff (page 28) and restorative travel (page 32). Have you ever faced barriers to treatment? Let us know by taking our Survey (page 33).
SMART + STRONG PRESIDENT AND COO Ian E. Anderson EDITORIAL DIRECTOR Oriol R. Gutierrez Jr. EXECUTIVE EDITOR Bob Barnett CHIEF TECHNOLOGY OFFICER Christian Evans VICE PRESIDENT, INTEGRATED SALES Diane Anderson INTEGRATED ADVERTISING MANAGER Jonathan Gaskell INTEGRATED ADVERTISING COORDINATOR 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. 14. 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.
(BARNETT) MICHAEL HALLIDAY; (ILLUSTRATION) ISTOCK
Health Equity
EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman SENIOR EDITOR Kate Ferguson DEPUTY EDITOR Trent Straube SCIENCE WRITERS Sukanya Charuchandra, Caroline Tien COPY CHIEF Joe Mejía ASSISTANT EDITOR Alicia Green ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; 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
CANCER DOESN’T STOP. NEITHER DO WE. FOR ONE NIGHT. WE STAND TOGETHER.
SATURDAY 8/21 8 ET/7 CENTRAL
American Lung Association’s LUNG FORCE, Amgen, Cless Family Foundation, Fanconi Anemia Research Fund, Farrah Fawcett Foundation, Jazz Pharmaceuticals, Laura Ziskin Family Trust, Legacy Circle, LUNGevity Foundation, Mirati Therapeutics, Pancreatic Cancer Canada, Sara Schottenstein Foundation, Society for Immunotherapy of Cancer, Lew, Jean, and Kari Wolff Stand Up To Cancer is a division of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization.
PZA530753.pgs 05.18.2021 03:10
ESA
CARE & TREATMENT
BY LIZ HIGHLEYMAN
GET CANCER SCREENINGS BACK ON TRACK Cancer screenings have dropped precipitously due to the COVID-19 pandemic. One recent study showed that breast, colon, prostate and lung cancer screenings declined by 56% to 85%. Although rates have rebounded since the initial COVID-19 crisis, they remain below pre-pandemic levels. As a result, doctors are seeing an uptick in later-stage cancer diagnoses. A study at last year’s San Antonio Breast Cancer Symposium showed that more women presented with advanced-stage and aggressive breast cancer during the first two months of California’s stay-at-home order. And a national survey by the American Society for Radiation Oncology found that new patients were coming in for radiation therapy with more advanced disease. In a Science magazine editorial last year, National Cancer
Institute director Norman Sharpless, MD, estimated that reduced screening due to the pandemic and the resulting delays in diagnosis and treatment could lead to nearly 10,000 extra deaths from breast and colorectal cancer over the next decade. That’s why the nonprofit CancerCare and the Community Oncology Alliance (COA) launched the “Time to Screen” campaign. Health care facilities are following precautions to keep people safe, and screening does not put you at risk of contracting the coronavirus. “It’s safer to get screened now, rather than delaying getting checked for cancer, because early detection catches cancer when it’s most treatable,” says COA president Kashyap Patel, MD. “It may even save your life.” To learn more, go to TimeToScreen.org or call 855-530-SCREEN.
Acupuncture Relieves Chronic Cancer Pain The need for better pain management for cancer survivors is urgent, given that an estimated 5 million survivors in the United States experience chronic pain after treatment. The PEACE trial—the largest study of its kind to date—recruited 360 people with a prior cancer diagnosis (including lymphoma, breast cancer and prostate cancer) but no current evidence of disease who reported musculoskeletal pain for at least three months. The participants were randomly assigned to receive electroacupuncture (which includes an electrical current)
or auricular acupuncture (which involves inserting studs into the ears for a period of days) for 10 weeks or standard care, such as pain-relieving medications, steroid injections and physical therapy. Before, during and after treatment, they were asked to rate their pain severity on a scale of 0 to 10. As described in JAMA Oncology, electroacupuncture reduced pain severity by an average of 1.9 points, while auricular acupuncture did so by an average of 1.6 points, compared with standard care. What’s more, the pain reduction with acupuncture was more
4 CancerHealth SUMMER 2021 cancerhealth.com
durable, and recipients reported improved functioning and better quality of life. “A one-point reduction in pain is clinically meaningful, so this is a pretty big drop,” says researcher Jun Mao, MD, of Memorial Sloan Kettering Cancer Center. “The pain relief of acupuncture lasts for months, which differs from pain medications, which must be taken frequently.” Mao hopes these findings will encourage insurers, including Medicare, to expand coverage of acupuncture to make it accessible to more people. —Caroline Tien
Can Viruses Help Treat Cancer? It’s well known that some viruses can cause cancer— but others are cancer killers. Oncolytic viruses both destroy cancer cells directly and promote immune responses against tumors—an approach known as immunovirotherapy. G207 is an engineered form of herpes simplex virus type 1—the virus that causes cold sores—that’s been modified so that it only infects cancer cells while leaving normal cells unharmed. A Phase I study presented at the American Association for Cancer Research annual meeting enrolled 12 pediatric patients ages 7 to 18 years old with high-grade glioma brain tumors. Gliomas are so-called cold tumors that don’t provoke a strong immune response. The participants received a single infusion of G207 administered into the brain through a catheter; half also received a
small dose of radiation. Eleven of the children experienced tumor shrinkage or clinical improvement. The median overall survival time was 12.2 months—more than twice the expected duration for untreated patients—and four were still alive 18 months or more after treatment. What’s more, they showed strong local immune responses, with an increase in cancer-fighting T cells. “This treatment can transform immunologically ‘cold’ pediatric high-grade gliomas with very few immune cells into ‘hot’ tumors with an abundance of immune cells, which is a critical step in the development of effective immunotherapy for children with brain tumors,” says Gregory Friedman, MD, of the University of Alabama at Birmingham.
ALL IMAGES: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
FDA Reconsiders Accelerated Approvals
Now Approved
The Food and Drug Administration (FDA) created its accelerated approval program to enable more rapid approval of therapies for serious conditions. Rather than waiting for enough deaths to determine whether there’s a survival advantage, medications may be approved based on surrogate endpoints, such as tumor shrinkage. But therapies granted accelerated approval are still required to undergo further testing to confirm that they do in fact offer clinical benefits. In April, an FDA advisory committee reviewed accelerated approvals of six indications for checkpoint inhibitor drugs that have not shown the expected clinical benefits in confirmatory trials. The panel voted to continue approval of Tecentriq (atezolizumab) plus Abraxane (nab-paclitaxel) for triple-negative breast cancer and two drugs, Tecentriq and Keytruda (pembrolizumab), for advanced bladder cancer. The panel unanimously favored maintaining approval of Keytruda alone but narrowly voted to rescind approval of Opdivo (nivolumab) monotherapy for liver cancer. Finally, they voted against maintaining approval of Keytruda monotherapy for stomach cancer. The experts recommended continued approval of therapies with no good alternatives, while rescinding approval if the treatment landscape has changed and better options are now available. Doctors are still allowed to prescribe available medications “off label” for unapproved indications, but insurers may not cover them. For more care and treatment news: cancerhealth.com/science-news
Here are the latest new cancer drugs approved by the Food and Drug Administration: • Abecma (idecabtagene vicleucel) CAR-T therapy for multiple myeloma • Fotivda (tivozanib) for advanced kidney cancer • Jemperli (dostarlimab) for endometrial cancer • Pepaxto (melphalan flufenamide) for multiple myeloma • Zynlonta (loncastuximab tesirine) for large B-cell lymphoma
cancerhealth.com
SUMMER 2021
CancerHealth 5
NEWS
BY BOB BARNETT
TOP APPS
At her laboratory at Massachusetts General Hospital (MGH) in Boston, Alexandra-Chloé Villani, PhD, and her team of geneticists and computational experts tackle a perplexing issue—the adverse side effects of immunotherapy drugs. PD-1 checkpoint inhibitors, which have revolutionized the treatment of many once-incurable cancers by releasing the brakes on the immune system, “are a good news story,” she says. But in some cases, they may also cause the body to attack healthy organs, including the heart and the colon, as well as tissue in the nervous system and elsewhere. The causes aren’t well understood but may include inflammatory chemicals (cytokines) released by the drugs that stay elevated. Some individuals may have latent susceptibility to autoimmune conditions triggered by immunotherapy. The main treatment is steroids, which broadly tamp down the immune system. But that can interfere with the efficacy of the immunotherapy, so the therapeutic goal is to minimize the dose and duration of steroids. The key is to identify patients with these side effects as early as possible. The sooner those complications are detected, says Villani, “the easier they are to reverse.” To make that happen, she partnered with MGH’s Kerry Reynolds, MD, clinical director of inpatient oncology, to create the Severe Immunotherapy Complications Service (SICE) in 2017. “We can move extremely quickly, running diagnostics,” Villani says. “We are capable of catching patients
The National Foundation for Cancer Research, established in 1973 to support cancer research and public education, recently updated its app recommendations. These top picks are free. Belong.Life (belong.life). Find a support group, get access to leading researchers, discover clinical trials and store medical records. Cancer.Net Mobile (cancer.net/navigatingcancer-care/managing-your-care/cancernet mobile). The American Society of Clinical Oncology’s app helps you track symptoms, appointments, medications and providers
6 CancerHealth SUMMER 2021 cancerhealth.com
very rapidly.” A multidisciplinary team can then be activated to manage those complications. The Villani team, though, has bigger goals. Using tissue samples Alexandra-Chloé Villani, PhD collected from SICE patients with their permission, the lab, with funding from the Damon Runyon Cancer Research Foundation, uses single-cell genomics and big data to find better diagnostics and treatments. “We can now measure genomic material, RNA and DNA, in multiple measurements at scale—thousands of parameters in one cell, for over 20,000 cells at a time,” she says. Her team then uses advanced computational techniques to mine this massive amount of data to identify unique patterns. “We use technologies to identify how a cell is wired, to explain toxicity,” she says. “We are trying to find therapeutic targets without using steroids, without impacting antitumor response.” Her lab has identified groups of “guilty” cells in tissues that are enriched with different toxicities. Several studies are underway, which may lead to clinical trials. “I am confident we will find solutions,” says Villani. “There are definitely clear signals. We are moving at a pace not possible 10 or even five years ago.” How confident? Says Villani, “I am putting my career on the line.”
while providing updated information on over 120 types of cancer. CareZone (carezone.com). Track appointments, treatments, care plans and drug protocols; keep a journal; and track essential stats, such as sleep and weight. Caring Bridge (caringbridge.org/how-itworks). Got a scan result and want to share it easily without texting or emailing everyone? This popular site makes it easy to set up a free website to keep family and friends up to date and offers an app.
COURTESY OF MASSACHUSETTS GENERAL HOSPITAL/TRACIE VAN AUKEN
SAFER IMMUNOTHERAPY
After Leukemia, Olympics Just over two years after she was diagnosed with leukemia, which led to a 10-month hospitalization, champion swimRikako Ikee mer Rikako Ikee is ready for the games. qualified for the 2021 Summer Olympics. The Tokyo native hopes to compete in the 4x100meter medley relay in July. Ikee first competed in the Olympics in 2016, at age 16. In 2019, she was diagnosed with acute lymphocytic leukemia. After a brief trial of chemotherapy, she underwent a stem cell (bone marrow) transplant. In a show of support for the popular young athlete, the number of people in Japan who registered as bone marrow donors in Feb-
ruary 2019 hit a record high. When she started training again, Ikee felt that her swimming ability had dropped to where it had been in junior high school. Her rapid progress surprised her. At the trials on April 4, 2021, she swam the women’s 100-meter butterfly in an impressive 57.77 seconds, winning by .41 seconds. Overcome with emotion, she hugged the swimmer in the next lane and climbed out of the pool to speak to waiting reporters with tears in her eyes. “No matter how unconfident or tough or difficult things are, if you work hard, you get rewarded,” Ikee said. “In the end, I went into the race thinking, I’m home. I belong here.” —Caroline Tien
(IKEE) INSTAGRAM/@IKEE.RIKAKO; (CIGARETTES) ISTOCK
Lung Cancer Screening Current or former heavy smokers are advised to undergo CT scan screening to detect cancer early, when it’s easier to treat—but only around 2% do so. To help boost screening, new guidelines from the U.S. Preventive Services Task Force recently expanded eligibility. Previously, screening was recommended for people age 55 and older who smoked at least a pack a day for 30 years (30 pack-years) and who either still smoke or quit within the past 15 years. The new recommendation lowers the screening age to 50 and the pack-year threshold to 20. These changes are expected to nearly double the number of individuals who meet the screening criteria and will include more women and Black people. —Sukanya Charuchandra Get more cancer news: cancerhealth.com/news
MYTH BUSTER:
Can a Biopsy Spread Cancer?
Seeding—the transfer of tumor cells from a dislodged biopsy needle—is not impossible but very rare, according to the American Society of Clinical Oncology (ASCO). One review of studies in BJU International found the incidence to be less than 1%. Another study, in Gut, found no increased risk of dying among people with pancreatic cancer who had biopsies. A 2019 study in Urology found no evidence of seeding at all among 42 patients with bladder cancer followed for 28 months. “Properly performed, biopsies often provide essential information to help diagnose, stage and inform clinical decision-making for patients with suspected or known cancer,” says ASCO editorial board member Jeffrey E. Gershenwald, MD, a professor of surgical oncology at MD Anderson Cancer Center in Houston.
cancerhealth.com
SUMMER 2021
CancerHealth 7
VOICES
BY KELLY SHANAHAN, MD
Reinvention IN 2008, I HAD EVERYTHING going for me: a busy and successful ob-gyn practice, a precocious 9-year-old daughter and a wellused passport from traveling all over the world with my family to attend conferences, with a liberal dose of vacations on the side. When I was diagnosed with Stage II breast cancer that April, I was treated with a bilateral mastectomy and four months of IV chemotherapy. I considered it a bump in the road. I moved on. For five years, breast cancer was something I put in the “past medical history” section of forms. Even when I developed sudden back pain, I never thought it could be breast cancer again—maybe a pulled muscle or a herniated disc but not what it turned out to be: metastatic breast cancer (MBC) in virtually every bone in my body, with a fractured vertebra and an about-to-break left femur. I was diagnosed in 2013, on my 53rd birthday. I have been extremely lucky. After an unconventional 14-month course of combination IV chemo and a bisphosphonate (for bone metastasis), followed by a more conventional aromatase inhibitor, I have remained NEAD—no evidence of active disease—since April 2014. Neuropathy from the chemo, however, cost me my career. The
numbness in my hands wasn’t going to go away, I realized, yet as an ob-gyn, my ability to palpate lumps, skillfully wield a scalpel or catch a baby depended on my hands. It was no longer safe for me to see patients. My entire identity was wrapped around being a doctor and a mom, and my daughter was approaching college and needing me less. I was adrift, questioning whether I even deserved to take up oxygen on this planet. Thankfully, I found a new purpose in advocacy. I attended patient-focused conferences and realized I could use my medical background to gather information about MBC, translate it into patient-friendly terms (a skill I honed in my 25 years of practice) and disseminate it through my growing social media presence. I went to major conferences, met researchers and oncologists and began partnering with them as a research advocate. In 2015, I discovered METAvivor and embraced their mission to raise research money to benefit people with metastasized breast cancer. I hosted a fundraiser stop on the first Sea to Sea for MBC Advocacy tour and, in 2019, joined the board
8 CancerHealth SUMMER 2021 cancerhealth.com
of directors. Kelly Shanahan, MD is on the I became a Cancer Health member of the advisory board. Metastatic Breast Cancer Alliance, a Susan G. Komen Advocate in Science, a helpline volunteer for Living Beyond Breast Cancer and Imerman Angels, and a grant reviewer for the Department of Defense’s Breast Cancer Research Program and several nonprofits. Sometimes we have to reinvent ourselves when life throws us curveballs. The feelings of worthlessness I felt when my career as an ob-gyn was stolen by MBC have been replaced with a sense of pride and accomplishment in what I can do as an advocate. I may not be saving lives with my scalpel, but I am making a difference in the lives of people with MBC. And, it turns out, even 22-year-old college grads still need their mom. ■ For more first-person essays, go to: cancerhealth.com/stories
COURTESY OF KELLY SHANAHAN
Kelly Shanahan, MD, 61, is a wife, mother, daughter and doctor living with metastatic breast cancer in South Lake Tahoe, California.
BY LIZ HIGHLEYMAN
BASICS
Kidney Cancer Treatment
Several new medications for kidney cancer have been approved in recent years.
ISTOCK
KIDNEY CANCER RATES HAVE risen over the past few decades, but the number and effectiveness of new treatments have increased as well, leading to improved survival. About 76,000 people will be diagnosed with kidney cancer this year, according to the American Cancer Society. Renal cell carcinoma (RCC) accounts for about 90% of these cases; clear cell carcinoma is the most common type of RCC. Kidney cancer may not cause symptoms during its early stages. This makes it challenging to detect at a more treatable stage, and many people are diagnosed after they have developed advanced disease. If symptoms do occur, they may include blood in the urine, pain in the lower back or side, lumps in the abdomen, unintentional weight loss and anemia. Diagnosis involves blood tests, urinalysis and scans to look for tumors and see how much the cancer has spread. A biopsy, or removal of a small tissue sample for examination in a laboratory, may be performed. TREATMENT OPTIONS Treatment for kidney cancer depends on how advanced it is and whether it has spread to other parts of the body. Because kidney cancer often grows slowly, small tumors are sometimes monitored without treatment to To read more Basics: cancerhealth/basics
see whether they progress—an approach known as active surveillance. Surgery (nephrectomy) is the main approach for kidney cancer, and it can lead to a cure if the cancer is confined to the kidney. The surgeon may remove part of a kidney or the entire organ. Most people can live a healthy life with only one kidney. KIDNEY CANCER DRUGS Kidney cancer generally does not respond well to chemotherapy, but other types of medications can lead to good outcomes. Targeted therapies work against cancer with specific characteristics. Typically, they interfere with signaling pathways that regulate cell growth. Most kidney tumors overproduce vascular endothelial growth factor (VEGF), a protein that promotes the formation of blood vessels. Anti-angiogenesis drugs block this process and starve tumors. VEGF inhibitors include the monoclonal antibody Avastin (bevacizumab) and several tyrosine kinase inhibitors (TKIs). Another type of targeted therapy, mTOR inhibitors, block both VEGF and proteins that spur kidney cancer growth. Immunotherapy helps the immune system fight cancer. Checkpoint inhibitors work by restoring T cells’ ability to
recognize and destroy cancer cells. Four checkpoint drugs are approved for the treatment of kidney cancer. Avastin and checkpoint inhibitors are administered by IV infusion, usually every two or three weeks. TKIs are taken as pills once or twice daily. Like all medications, these drugs can cause side effects, which in some cases may be serious. These medications often halt kidney cancer growth and even shrink tumors. But targeted therapies can stop working as the cancer becomes resistant, and immunotherapies don’t work for everyone. Studies have shown that combination regimens—for example, a targeted therapy plus an immunotherapy drug—can be more effective. Kidney cancer treatment has evolved rapidly in recent years, and several new therapies are in development. Ask your doctor whether a clinical trial might be a good option for you. ■
cancerhealth.com
SUMMER 2021
CancerHealth 11
DIARY
AS TOLD TO KATE FERGUSON
A Colon Cancer Diary Native American artist and writer Robert DesJarlait, 74, of Onamia, Minnesota, is a member of the Red Lake Ojibwe tribe and a colon cancer survivor and advocate.
April 2013 I began to feel a lot of fatigue. I’d had a heart attack the previous Thanksgiving, but this fatigue felt different. I went to my doctor, and she did blood work. My red cell count was down, and she said I was anemic. Then she asked if I’d be willing to see a specialist, so I said yes. I knew at that moment that it was cancer. My dad had died of stomach cancer in 1972. I was scared. I’d watched my father literally waste away for about nine months before he finally passed. After I left the clinic, I sat in my car. The sun was out; the sky was blue. How would I tell my family, and what was going to happen to me? When I went to see the gastroenterologist at the University of Minnesota Hospital’s Masonic Cancer Center, my wife, Nanette, came with me. They did a colonoscopy and found a fairly large tumor in the wall of my ascending colon, so they did a biopsy. Because it hadn’t broken through yet, my surgeon wanted to do surgery right away. May 2013 They performed laparoscopic surgery and removed my ascending colon. My cancer was classified as Stage I, and I didn’t have to have chemo. But my doctor did consider me a high-risk cancer patient and put me in touch with an oncologist. November 2013 I felt this little bump. When I mentioned it to my doctor, she told me it was a hernia from my surgery and not to worry about it. The oncologist put me on a five-year surveillance program with CT scans every 12 months plus lab and blood work. Because I was a high-risk patient, I had to have a colonoscopy each year. Afterward, everything was going good—year one: no problem; year two: no problem.
12 CancerHealth SUMMER 2021 cancerhealth.com
June 2016 In my third year, something showed up on my CT scan. My oncologist said, “We found a small tumor—a lesion on the left lobe of your liver.” He ordered a PET scan. The liver lit up along with a lymph node in my neck. Another specialist did a biopsy on my neck. It was a benign tumor called Warthin’s tumor, which the doctors said they’d leave alone, as it was too near to nerves that went into my face. October 2016 My oncologist diagnosed me with Stage IV [metastatic] cancer because it had spread to another organ from the site of origin. Doctors prescribed six rounds of neoadjuvant, or preoperative, chemo using a platinum-based treatment of infusions, followed by chemotherapy pills that I had to take daily for three weeks. I would stop the pills for a week and then start my next treatment cycle. After my third infusion, I left the clinic and couldn’t breathe. Then the problem just went away. After a severe reaction to round four, my oncologist canceled the remaining two rounds, and we went ahead with surgery. November 2016 My operation lasted nine hours: three hours for the liver and six hours for the hernia. This second surgery was rough. I was in a lot of pain, and I could only hit the morphine button about every 10 minutes. I was out of the hospital in five days. January 2017 Following surgery, I received 12 rounds of adjuvant, or postoperative, chemo. I began the five-year surveillance program anew.
In the ceremony, we use tobacco, sage, sweetgrass and cedar. You put tobacco outside in the morning by a tree and offer a prayer. You burn sage, sweetgrass and cedar in an abalone shell. I used my eagle fan to smudge myself with smoke from those substances. The healing ceremony provides harmony and balance in your mind from a spiritual Native perspective.
(PAPER) ISTOCK; (ALL OTHERS) COURTESY OF ROBERT DESJARLAIT
Artist Robert DesJarlait and his paintings Self-Portrait and Tied Rice and at a powwow with a special eagle staff he created for cancer
They put me on infusions of a plant alkaloid and a topoisomerase I inhibitor. I had nausea, diarrhea and fatigue and lost all my body hair except for my eyebrows. I’ve always worn my hair long, so it was hard losing my hair. I’m a dancer at powwows, and people were really shocked to see me with no hair. Sometimes, I would just take my hat off and let everybody see what was happening. The Ojibwe word for spider is asabikeshi. In my culture, asabikeshi also means cancer. A friend who is a doctor told me that after surgery, the spider leaves behind its web, which spreads through your body. The chemo destroys the web. Hearing it from that tribal perspective deepened my understanding of what it was doing. November 2017 While going through treatment, I had a healing ceremony. At my house, a healer offered prayers and used an eagle fan to bathe me in smoke from sage—called smudging. We know that no ceremony is going to cure cancer. But there are things to help us psychologically, spiritually and mentally while we undergo treatment. For more first-person stories: cancerhealth.com/stories
June 2018 My work with the American Indian Cancer Foundation allowed me to attend powwows during the summer. I would tell people my cancer story and then talk about colon cancer. Native people have high rates of colon cancer, so I’d emphasize that people need to get screened. July 2019 In 2019, I had an art show called Reemergence with about 20 paintings at the Two Rivers Gallery in Minneapolis. I work in watercolor, and the subject matter of my art is the Ojibwe people. One of the things that changed my life around was when I quit drinking and using drugs in 1982, because at that point I got back to art. July 2020 After I started my cancer journey, I looked at things I could accomplish. I had agreed to do an art show before COVID-19. When the pandemic came along, we did a virtual art show—Ojibwe Manidoowiwin. It was a successful solo exhibition that lasted from July through September. March 2021 On March 23, I was awarded the 2021 Minnesota Colorectal Champion by the American Cancer Society and the Colon Cancer Coalition for my work as an advocate. Then, on March 31, the American Indian Cancer Foundation honored me with a star quilt and plaque in recognition of my work in the Native American community. I also just passed my fourth year on the high-risk surveillance program. I have one more year left. My last CT scan is in January 2022. I’m hoping I get there with no evidence of disease.
cancerhealth.com
SUMMER 2021
CancerHealth 13
An entrepreneur and engineer, Michael Whitley stays on top of every new treatment.
ENGINEERING HIS RECOVERY Michael Whitley, 43, has a can-do attitude that helps him navigate a complex path through metastatic kidney cancer. BY BOB BARNETT
(WHITLEY) COURTESY OF MICHAEL WHITLEY; (DRAWING) ISTOCK
IF YOU’RE GOING TO GET KIDNEY CANCER, it helps if your best friend is a nephrologist. Michael Whitley, now 43, an engineer in Huntsville, Alabama, and nephrologist Heather Haley, DO, hit it off immediately when they met at a party in 2010. Although Haley was born nearby, she’d been away for 14 years and didn’t know anyone in town outside of work. “Michael was a bright light, an instant friend to everyone, with no ill will to anyone, intelligent and interesting and on the brink of success,” recalls Haley. She was dating at the time, but she knew he was gay, so it was easy to remain friends—“whoever I was dating at the time didn’t care.” (She encouraged him to come out to his parents, but he wasn’t quite ready.) Whitley ushered at Haley’s wedding, and when she and her husband had a daughter, he became a close family friend. Haley tells a story to illustrate his inventiveness. “I have a boat, and one day we were waterskiing, but the rope kept getting caught on the deck. Michael went home and created a 3-D molded cover to go over the cleat.” That solved it.
“I like building things, figuring out how things work,” says Whitley, who grew up working on cars with his dad. “I always believed that if you can understand how something works, you can fi x it.”
MORE THAN A STONE In January 2019, Whitley had pain on urinating and blood in his urine and passed what he thought was a kidney stone. He called Haley, who agreed that that was probably what it was and asked him to come in for testing. But he was busy with EngeniusMicro, the engineering company he cofounded, and was also studying for an MBA. He passed a few more “stones” over the next few months (they were actually blood clots). Finally, right before Labor Day, he felt a larger stone coming on and agreed to go in for blood work and testing, both of which were normal. Haley recommended CT scans. The results were also sent to Whitley, who saw something large on his left kidney and texted Haley. “I read the text, read the scan, and my
cancerhealth.com
SUMMER 2021
CancerHealth 15
heart sank,” she recalls. She asked him to call his boyfriend, also named Michael, and meet her at the hospital. Whitley had a large tumor on his left kidney and small metastatic tumors on both lungs, his right adrenal gland and left femoral neck (the pelvic bone where the hip ball and socket meet). He was diagnosed with Stage IV clear cell renal cell carcinoma—metastatic kidney cancer. “I called my mom,” recalls Whitley, “and told her, ‘I have a massive tumor on my kidney, it’s Stage IV, I’ve been admitted to the hospital, I’m having surgery soon and I’m gay and have a long-term boyfriend.’ She replied, ‘Is he good to you? That’s all I care about.’” His dad said the same thing. His parents drove up from Anniston, Alabama, met his boyfriend (who hadn’t left his side) and stayed at Haley’s house. Whitley had surgery to remove his left kidney and the adrenal tumor. Google told him the five-year survival rate for Stage IV was 8%. Fortunately, Google was out of date.
cologists now have many options if that occurs, including better drug sequencing and multidrug combinations (see Basics, page 11). Says Rini, “We have a long way to go. We’re not curing most patients, but it’s an exciting time.” Whitley wasn’t cured, but nearly two years after his diagnosis, his disease is stable. He hardly ever stopped working, and his quality of life is improving. But it hasn’t been an easy journey. THE RIGHT PATH Working with a local oncologist, Whitley started a newly approved combination of immunotherapy drugs after surgery. “It was the correct and best treatment,” he says, “but unfortunately, my cancer did not respond.” His oncologist recommended a second opinion. That’s when Whitley found Battle, who connected him with Rini. “My advice is to always get a second opinion, whether your disease is advanced or localized,” says Rini. Even if your original regimen is confirmed, he says, it’s reassuring. Rini put Whitley on a TKI. “He’s had a great response and is tolerating it well. It’s not curative, but I’ve had patients on this drug for years.” Whitley, he says, is one of his most cancer-educated patients. “He knows the data and trials; he listens to podcasts; as soon as data come out, he’s aware,” he says. But Whitley also respects expertise. Says Rini, “He’s the right combination, and at the end of the day, he trusts my decision-making.”
16 CancerHealth SUMMER 2021 cancerhealth.com
AN UNEXPECTED SIDE EFFECT The first treatment, though, had already caused damage— a rare adverse response to immunotherapy (see News, page 6) that led to severe neuropathy in his ankles and feet. At the time, Whitley, preoccupied with radiation and surgery for his bone metastasis, ignored the symptoms, including pain “like walking on a bed of nails.” The symptoms seemed to resolve, but that was because neuropathy was causing a loss of sensation, he would later find out. When he showed up at Haley’s house on a football game weekend, he asked her husband, Brandon, to help him get out of his car. She saw he had trouble lifting his
ISTOCK
I KNOW WHAT MATTERS TO ME NOW. I’M WILLING TO TAKE MORE RISKS.
A NEW TREATMENT ERA Today, the survival rate for metastatic kidney cancer is 13%—but that’s likely an underestimate. “Statistics are always a little delayed,” says Dena Battle, who founded the kidney cancer nonprofit KCCure. When Whitley’s oncologist, Brian Rini, MD, a kidney cancer researcher at Vanderbilt University Medical Center in Nashville, started practicing medicine two decades ago, he recalls, “Patients with advanced cancer lived about a year.” Ten years ago, the average had risen to two to three years; now, it’s four to five years, he says. A major advance occurred in 2005, when the Food and Drug Administration approved the first tyrosine kinase inhibitor (TKI), a targeted therapy that blocks a growth factor (VEGF) that nearly all kidney cancers use to hijack the blood supply and grow. Now, there are a host of targeted therapies, including next-generation TKIs as well as mTOR inhibitors, which block VEGF through a different mechanism. In 2015, the first checkpoint inhibitor immunotherapy, which unleashes the immune system against tumors, was approved for advanced kidney cancer; more followed. Then, drug combinations were approved. Any one TKI may eventually stop working, but on-
feet. Recalls Haley, “I asked him, ‘Who knows about this? Why aren’t you in the hospital?’ He told me he didn’t want to bother anyone.” No longer able to walk, Whitley was fitted with ankle braces, given a walker, prescribed steroids (prednisone) and, later, intravenous immunoglobulin and started physical therapy. He regrets not starting prednisone earlier, adding, “If this had been caught earlier, I wouldn’t have as far to come back from.” Whitley’s delay is common. “Patients are really reluctant to talk to their doctors about side effects,” says Battle. “They’re nervous about being taken off therapy or having the dose reduced. Men in particular often don’t want to complain.” But addressing side effects early can benefit treatment, she says. “You’ll actually have a better chance to stay on therapy longer.” Says Julie Silver, MD, director of cancer rehabilitation at Spaulding Rehabilitation Network in Boston, “The earlier we pick up problems, the more amenable they are to rehab interventions.” Whitley still wears braces but has made great progress. He walks without a cane and is working on balance and strength. “I can’t run or ride a bicycle outside, but I think those will come back in the next few months,” he says. LOOKING FORWARD “I feel pretty good,” says Whitley. He has side effects from his current therapy, including elevated blood pressure and low thyroid hormone levels, for which he takes medications. He sometimes has digestive issues, but the fatigue is the worst, especially toward the end of his three-week daily pill regimen. But he feels “completely reset” after the routine three-day pause. “I know that I will have progression—it’s not a cure. But the longer I stay on this drug combination and stay stable, the better. My hope is to be alive in five years and there will be a cure by then.” He’s become an advocate, lobbying politicians for more cancer funding, working as a patient reviewer on clinical trials and helping those newly diagnosed find information and comfort. His company is growing. He and his boyfriend moved in together in the middle of 2020. “I can now focus my time on things other than cancer,” he says. Cancer has made him more empathetic and adventuresome. “I’ve learned to trust and rely on people. I know exactly what matters to me. And I want people who matter to me to know it. It’s made me feel invincible, which is crazy, but I’m a little more willing to take risks. I am going to do exactly what I want because I may have a time limit. I feel a freedom to take more chances.” ■
SOMETHING IN THE WATER? “Here’s the weird thing: There are three other men about my age from my hometown who have kidney cancer,” says Michael Whitley, who has metastatic kidney cancer. He grew up in Anniston, Alabama, and at his parents’ house on Henry Lake along the Coosa River. “I grew up on that lake,” he says, “swimming in the river and fishing.” Anniston was home to a Monsanto plant that produced carcinogenic polychlorinated biphenyls (PCBs). It closed in 1971, and the Environmental Protection Agency (EPA) banned PCBs in 1979. But these “forever” chemicals don’t break down in water. “I grew up close to the Monsanto plant, which buried PCBs in the river,” recalls Whitley. Another forever chemical is perfluorooctanoic acid (PFOA), used to make Teflon. 3M made PFOA in Decatur, Alabama, and later, due to a lawsuit, spent over $30 million to remove it from drinking water. In a 2020 study, National Cancer Institute epidemiologist Jonathan Hofmann, PhD, MPH, compared blood samples from 324 people with renal cell carcinoma (RCC)—kidney cancer—and matched controls. “For each doubling in serum concentrations of PFOA, there was a 70% increase in risk of RCC,” says Hofmann. “Those with the highest concentrations of PFOA were more than twice as likely to develop this malignancy compared to those with the lowest concentrations.” PFOA is no longer made in the United States but is not yet regularly screened for in municipal drinking water. Says David Whiteside of Tennessee Riverkeeper, “In the U.S., these chemicals are largely innocent until proven guilty, which places the burden on people rather than corporations.” Whitley admits he’ll never know for sure: “There’s no way to tell, although kidney cancer is unusual for someone my age.”
cancerhealth.com
SUMMER 2021
CancerHealth 17
“OF ALL THE FORMS OF INEQUALITY, INJUSTICE IN health care is the most shocking and inhumane,” declared Martin Luther King Jr. in 1966. In 2021, more than 50 years later, the Centers for Disease Control and Prevention (CDC) reaffirmed that racism is a public health threat: “The impact is pervasive and deeply embedded in our society—affecting where one lives, learns, works, worships and plays and creating inequities in access to a range of social and economic benefits—such as housing, education, wealth, and employment. These conditions…are key drivers of health inequities within
communities of color.” The health threat is dramatic in cancer. According to the American Society of Clinical Oncology (ASCO), “Racial and ethnic minorities face poorer outcomes, are less frequently enrolled in clinical trials and are less likely to be offered palliative care, genetic testing and other critical care. Specifically, African Americans have the highest death rate and shortest length of survival of any racial/ethnic group for most cancers.”
18 CancerHealth SUMMER 2021 cancerhealth.com
We recognize that many groups experience cancer health disparities, including Latinos, Native Americans, Asian Americans and people who are LGBTQ , older, disabled, poor, rural and more. This year, however, we dedicate the second annual edition of Cancer Health’s Change Makers to Black lives. The list recognizes 25 individuals who, along with many others, are fighting to break down barriers to the best cancer care for all Americans.
THE CANCER HEALTH
BLACK LIVES MATTER
These remarkable individuals are breaking down racial barriers to better cancer care.
(ADAMSON) COURTESY OF ADEWOLE SHOMARI ADAMSON/KELLY DAVIDSON PHOTOGRAPHY; (BURNHAM) COURTESY OF LEANNE BURNHAM; (CARPTEN) COURTESY OF USC KECK SCHOOL OF MEDICINE; (CHAMBERS) COURTESY OF SHONTA CHAMBERS
BY THE CANCER HEALTH STAFF
Adewole Shomari Adamson, MD, MPP Austin, Texas Board-certified dermatologist Adewole “Ade” Adamson, MD, MPP, an assistant professor of internal medicine at the University of Texas at Austin Dell Medical School, cares for patients at high risk for melanoma. His research has challenged the way doctors treat melanoma in people of color. He has also published research on the problematic legacy of dermatologist Albert Kligman, who conducted medical experiments on Black prisoners from the 1950s to the 1970s. Adamson also researches how racial factors might influence the accuracy of artificial intelligence– based diagnostic outcomes.
Leanne Burnham, PhD Ontario, California When her father was diagnosed with prostate cancer in his early 50s, Leanne Burnham, PhD, noticed how the disease disproportionately affects Black men. Now a scientist at City of Hope’s Division of Health Equities in California, Burnham, 41, addresses prostate cancer health disparities at the research level, in clinical settings and in the Black community. She collaborates extensively to include high-risk Black men in prostate cancer studies. Burnham also helps coordinate free prostate cancer screenings and educational events for Black and Latino men in Los Angeles. Leanne is a Stage IV (metastatic) Hodgkin lymphoma survivor.
John Carpten, PhD Los Angeles, California A professor and the director of the Institute of Translational Genomics at the University of Southern California’s Keck School of Medicine in Los Angeles, John Carpten, PhD, explores how hereditary genetic variations influence the risk of prostate cancer and its response to treatment. He was an early pioneer in understanding the contribution of biology to disparities in cancer incidence and death rates among African Americans and other underrepresented populations. Carpten serves on the American Association of Cancer Research board of directors. He is also chair of the organization’s Minorities in Cancer Research Council, which aims to address disparities in cancer incidence and mortality as well as advance the careers of minority scientists.
Shonta Chambers, MSW Riverdale, Georgia As staff lead for the nonprofit Patient Advocate Foundation’s health equity work, Shonta Chambers, MSW, 48, uses her voice to elevate the health and quality of life of people with cancer and other chronic diseases. Chambers works with community stakeholders to reduce obstacles to optimal health for people living with disease in low-income neighborhoods. She cochaired the National Comprehensive Cancer Network’s Elevating Cancer Equity Working Group, formed to advance equity in oncology. In addition, she works to eliminate tobacco- and
cancerhealth.com
SUMMER 2021
CancerHealth 19
David Tom Cooke, MD Sacramento, California An associate professor of clinical surgery at the University of California, Davis School of Medicine, David Cooke, MD, 48, is well aware of the inequities that plague medicine. Case in point: He was recently mistaken for an orderly by one of his patients. But such experiences have helped inform his career path. In 2013, Cooke, a national expert on lung and esophageal disease, cofounded the popular bimonthly #LCSM (lung cancer social media) chat on Twitter and in 2019 was named chair of the Society of Thoracic Surgeons’ Workforce on Diversity and Inclusion. His scholarly work includes research into disparities in lung cancer care between racial groups.
Andre Dawson Miami, Florida In 2012, retired Baseball Hall of Famer Andre “the Hawk” Dawson was working as a special assistant to the Miami Marlins when, during spring training, a routine physical revealed an elevated PSA level. A biopsy later confirmed prostate cancer, and he elected to have his prostate removed. To encourage men to get tested, Dawson began sharing his story, often working with the Sylvester Comprehensive Cancer Center at the University of Miami. Now 66 and the owner of a funeral home in Miami, Dawson still urges men, especially Black men, who are at higher risk, to “test as early as possible and stay on top of your health.”
Thomas Farrington Quincy, Massachusetts Visit the website or Facebook page of Prostate Health Education Network (PHEN)—a nonprofit dedicated to ending African-American prostate cancer disparities—and you’ll find webinars, personal testimonies, promotions for the African American Prostate Cancer Disparity Summit in September and scenes from Daddy’s
20 CancerHealth SUMMER 2021 cancerhealth.com
Boys, a play about a Black widower and his sons who come together when faced with his prostate cancer. Church partnerships are pivotal to PHEN’s outreach, says Thomas Farrington, 77, a prostate cancer survivor and author who launched PHEN in 2003. Daddy’s Boys, which began touring theaters and churches in 2018 before going virtual, offers education as entertainment. “Our goal,” Farrington says, “is to reach 1 million with this initiative in 2021.”
Tamika Felder Upper Marlboro, Maryland Award-winning television producer Tamika Felder, 45, lost her fertility and nearly her life when she was diagnosed with Stage II cervical cancer at age 25. Like many Black women, who are more likely than white women to die of this preventable disease, she lacked health insurance. To raise awareness, she founded Tamika & Friends, later renamed Cervivor, a nonprofit that promotes human papillomavirus (HPV) screening and empowers women living with cervical cancer. A community builder and storyteller, Felder supports patients emotionally and helps them navigate becoming patient advocates. She works to change laws to allow fertility preservation for all people with cancer, regardless of skin color or sexual identity. Felder is a member of the President’s Cancer Panel’s cervical cancer task force.
Jennifer Flowers Hayward, California As a myeloma survivor and a volunteer for The Leukemia & Lymphoma Society (LLS), Jennifer Flowers, 64, is dedicated to helping others who have been in her shoes. Diagnosed in 2008 and now in remission, she works with the LLS program Myeloma Link, an outreach and education program for Black Americans with myeloma. As a community outreach volunteer, Flowers connects with Black patients and caregivers to provide reliable information about myeloma and other blood cancers through community-based programs and activities. While dealing with myeloma during the COVID-19 pandemic, Flowers urges her fellow patients to rely on one another and LLS: “Remember, we are better together!”
(COOKE) COURTESY OF UC DAVIS; (DAWSON) CC BY-SA 2.0/BARBARA MOORE; (FARRINGTON) COURTESY OF PHEN; (FELDER) COURTESY OF TAMIKA FELDER; (FLOWERS) COURTESY OF JENNIFER FLOWERS
cancer-related health disparities as principal investigator of the SelfMade Health Network, part of a consortium of national organizations run by the CDC.
THE CANCER HEALTH
BLACK LIVES MATTER
(FOXX) COURTESY OF STAND UP TO CANCER; (HART) COURTESY OF ERICKA HART; (HENLEY) COURTESY OF CANDACE HENLEY; (JACKSON) COURTESY OF SISTERS NETWORK INC.; (KARMO) COURTESY OF MAIMAH KARMO/MADIOU ART; (KENDI) COURTESY OF BOSTON UNIVERSITY CENTER FOR ANTIRACIST RESEARCH/STEPHEN VOSS
Jamie Foxx Thousand Oaks, California Academy Award winner Jamie Foxx, 53, knows that colon cancer hits the Black community especially hard. “I’ve lost good friends—young friends—to this deadly disease,” says the popular actor, singer and comedian, who took to Instagram last year to mourn the death of actor Chadwick Boseman from the disease at age 43. Black Americans have the highest rates of colorectal cancer—a highly preventable cancer. Foxx has joined the nonprofit Stand Up To Cancer and the screening firm Exact Sciences as a spokesperson for their joint multimedia campaign to raise awareness in underserved communities about colorectal cancer screening, early detection and prevention to address that disparity.
Ericka Hart Brooklyn, New York Ericka Hart’s desire to challenge ingrained assumptions about breast cancer for people of color is informed by her own experiences as a survivor. When she was 28, the sexuality educator and performer, who uses she/they pronouns, was diagnosed with the disease in both breasts. Once she recovered, Hart, 35, felt that it was her responsibility to ensure that mainstream portrayals of breast cancer patients expanded to include people like her—people who are Black and queer or nonbinary. Ever since, Hart has fought to dispel stereotypes associated with the disease and its treatment by advocating for screening and sexual health awareness.
Candace Henley Chicago, Illinois At age 36, after several visits to the ER, Candace Henley was eventually diagnosed with colon cancer. In Chicago, low-income Black and Latino communities face cancer death rates that are up to double the national average. Henley, 53, who lost her home and car while recovering from the illness, saw the need for more minority outreach. When her appeals to local organizations were unsuccessful, Henley launched the event Blue Hat Bow Tie Sunday, which later became The Blue Hat Foundation.
Now, 15 churches in Chicago and in other cities throughout the country host the event. Blue Hat provides education, information and free screenings for the disease in minority and medically underserved communities.
Karen Eubanks Jackson Houston, Texas A 28-year survivor of four breast cancer diagnoses, Karen Eubanks Jackson was first diagnosed with Stage II breast cancer in 1993. This motivated her to create Sisters Network Inc. in 1994, the largest and only national Black breast cancer survivor organization. Many Black women with breast cancer face unmet needs and may face worse outcomes, not only due to lack of health care and insurance but also as a result of daily experience with systemic racial injustice and insufficient income, she notes. Sisters Network Inc. helps women via educational outreach programs, survivor and family support, and financial assistance. Jackson shared her story in the book In the Company of My Sisters: My Story, My Truth.
Maimah Karmo Reston, Virginia In 2006, at age 32, Maimah Karmo, a Liberia native, had already survived three wars and a lightning strike when she was diagnosed with Stage II breast cancer. The experience inspired Karmo to found the nonprofit Tigerlily Foundation to support and advocate for young women with breast cancer. In 2011, Karmo collaborated with U.S. Representative Debbie Wasserman Schultz of Florida on the Breast Cancer Education and Awareness Requires Learning Young (EARLY) Act. She was appointed to the federal Advisory Committee on Breast Cancer in Young Women, where she works to raise awareness of breast cancer and increase access to preventive screenings, particularly for high-risk populations, such as Black women.
Ibram X. Kendi, PhD Boston, Massachusetts Racism is like a metastatic cancer on America, writes humanities professor
cancerhealth.com
SUMMER 2021
CancerHealth 21
Erin Kobetz, PhD, MPH Miami, Florida In 2003, Erin Kobetz, PhD, MPH, discovered astonishingly high rates of cervical cancer in the Haitian community in Miami. Using her personal experience as a thyroid cancer survivor, she reached out directly to the community of Little Haiti and was able to successfully collaborate with local experts to find culturally sensitive ways to improve screening. Kobetz, 45, continues to support marginalized communities through her internationally recognized work, which focuses on dialogue and partnership between academic researchers and local community members. Kobetz’s motto, “We are stronger together,” is a reflection of her innovative, collaborative approach to cancer prevention and health equity.
Russell Ledet, PhD New Orleans, Louisiana Russell Ledet, PhD, 35, has made an impact around the world in support of underrepresented minority students looking to enter the medical field. A Navy veteran, Ledet worked as a security guard at a local hospital and later returned to the same hospital as a medical student. In 2020, motivated by the glaring racial disparities in health care, including oncology, Ledet cofounded The 15 White Coats, a nonprofit organization that provides inspiration and economic support for future medical students of color. When he goes into residency, Ledet plans to focus on mental health access for marginalized communities.
22 CancerHealth SUMMER 2021 cancerhealth.com
Edith P. Mitchell, MD Philadelphia, Pennsylvania In 1972, while being fitted for her white coat, Edith P. Mitchell, MD, was asked whether she was excited to be working in the hospital kitchen. Today, the medical oncologist, a clinical professor at Thomas Jefferson University Hospital in Philadelphia who specializes in gastrointestinal malignancies, serves as the associate director of diversity services at Sidney Kimmel Cancer Center. A former president of the National Medical Association and an inductee into the National Historical Black College Hall of Fame, Mitchell, a retired Air Force brigadier general, keeps racial disparities and underserved populations, including LGBTQ people, at the forefront of her work in oncology.
Marcella Nunez-Smith, MD, MHS New Haven, Connecticut One of the nation’s foremost experts on health equity, Marcella Nunez-Smith, MD, MHS, pursued a medical degree after her childhood in the U.S. Virgin Islands. Influenced by her mother, a nursing professor, and her father, who suffered a debilitating stroke in his 40s, Nunez-Smith, an associate dean at Yale University, has devoted her career to examining the social and structural drivers of health disparities among marginalized populations and works to improve cancer health and health care equity. This year, she became a senior adviser to the White House COVID-19 Response Team and chair of the COVID-19 Health Equity Task Force.
Lori J. Pierce, MD Ann Arbor, Michigan Lori J. Pierce, MD, served as the 2020– 2021 president of ASCO, the first Black woman to hold that position. In 2018, Pierce, a radiation oncologist and professor at the University of Michigan in Ann Arbor, was elected to the National Academy of Medicine in recognition of her research on radiation treatment for breast cancer and her efforts to draw more women and people of color into medicine. Equity of care was the theme of Pierce’s ASCO presidency, a goal that became even more pressing during the COVID-19 pandemic. She aims to foster a
(KOBETZ) COURTESY OF SYLVESTER COMPREHENSIVE CANCER CENTER; (LEDET) COURTESY OF RUSSELL LEDET; (MITCHELL) COURTESY OF THOMAS JEFFERSON UNIVERSITY; (NUNEZ-SMITH) COURTESY OF YALE UNIVERSITY/DAN RENZETTI;(PIERCE) COURTESY OF ASCO
Ibram X. Kendi, PhD, founding director of the Boston University Center for Antiracist Research. It’s an apt metaphor—and a personal one. The National Book Award– winning author of Stamped from the Beginning: The Definitive History of Racist Ideas in America was diagnosed with Stage IV (metastatic) colon cancer at age 35. At the time, he was completing How to Be an Antiracist, another groundbreaking best seller. In his books and speeches, Kendi, 38, culls from his personal experiences with cancer and racism as he encourages us to become antiracist, insights that earned him a place on Time magazine’s list of the 100 most influential people in 2020.
THE CANCER HEALTH
BLACK LIVES MATTER
more diverse oncology workforce that better reflects the patients it serves.
(REGNANTE) COURTESY OF LUNGEVITY; (RIVERS) COURTESY OF JAMIL RIVERS; (WEERARATNA) COURTESY OF ASHAN TANJUA WEERARATNA; (WINKFIELD) COURTESY OF KAREN WINKFIELD/KUMOLU STUDIOS; (WINN) COURTESY OF VCU MASSEY CANCER CENTER
Jeanne M. Regnante Philadelphia, Pennsylvania As chief health equity and diversity officer at the national nonprofit LUNGevity Foundation, Jeanne M. Regnante, 60, works to change outcomes for people with lung cancer by ensuring that all patients—from low socioeconomic communities, racial and ethnic minorities and LGBTQ communities as well as older people, immigrants, people with disabilities and rural populations— receive equal access to care and treatment and inclusion in clinical trials. She believes that engaging with vulnerable communities and listening to their perspectives is the most effective way to develop strategies to empower them.
Jamil Rivers Philadelphia, Pennsylvania Four years ago, Jamil Rivers, 43, was diagnosed with Stage IV (metastatic) breast cancer. In learning everything she could about the disease, Rivers made a commitment to address the disparities she noticed in breast cancer care and improve health equity for women of color. She dived into advocacy, sharing her experiences and using her voice to advance legislative policy and research. In 2020, she launched the Chrysalis Initiative, a nonprofit that mentors patients with breast cancer and teaches them how to navigate resources and emphasizes outreach to AfricanAmerican women. In 2020, she became the first Black board president of METAvivor, a national nonprofit dedicated to funding research for metastatic breast cancer.
Ashani Tanjua Weeraratna, PhD Baltimore, Maryland Ashani Tanjua Weeraratna, PhD, 50, a Bloomberg Distinguished Professor at the Johns Hopkins Bloomberg School of Public Health, is a staunch advocate for immigrants and women in science, including women of color. A winner of the Melanoma Research Foundation’s 2015 established investigator award, Weeraratna, whose
research focuses on the impact of aging on the development and progression of melanoma, is the 2020–2021 president of the Society for Melanoma Research. A native of Sri Lanka, she fought obstacles to her own immigration and now, as a citizen, advocates against policies that keep fellow immigrants from contributing to American science and cancer research.
Karen M. Winkfield, MD, PhD Nashville, Tennessee Radiation oncologist Karen M. Winkfield, MD, PhD, 51, executive director of the Meharry-Vanderbilt Alliance in Nashville, is a national expert on ways to engage communities to reduce barriers that lead to racial disparities in cancer. She has long worked in underserved communities to identify the elements of institutional racism that keep people with cancer from entering clinical trials. She’s on the Stand Up To Cancer’s Health Equity Committee and oversees its efforts to increase diverse enrollment in cancer clinical trials, fund innovative research that addresses cancer inequities and raise awareness of cancer screenings in underserved communities.
Robert Winn, MD Richmond, Virginia In December 2019, when Robert Winn, MD, was named director of Virginia Commonwealth University’s Massey Cancer Center in Richmond, he became the only Black director among the National Cancer Institute’s 71 designated cancer centers at the time. A pulmonologist who conducts basic research on lung cancer, Winn, 56, focuses much of his work on health disparities and community-based health care. He is cochair of the Elevating Cancer Equity Working Group, convened this year by the American Cancer Society Cancer Action Network, as well as the National Comprehensive Cancer Network and the National Minority Quality Forum. The group has developed an Equity Report Card that includes recommendations for community engagement, accessibility of care and addressing bias in care delivery. In February, he hosted First Lady Jill Biden for a tour and a livestreamed discussion about how Massey is working with the community to address cancer disparities. ■
cancerhealth.com
SUMMER 2021
CancerHealth 23
LIFE WITH CANCER
BY SONIA DOLINGER
Youngish With Cancer
NO TIME IS A GOOD TIME TO start a cancer journey. But when you’re in your 30s or 40s with children, there are unique challenges. It is truly a family affair. I was 39 when I was diagnosed with chronic lymphocytic leukemia (CLL), an incurable blood cancer with a typical diagnosis age of 72. The average life expectancy was a mere seven years, I was told—and that was before testing revealed that my flavor of CLL was more aggressive than most. I dove headfirst into research, trying to find just one person who had beaten an aggressive case of CLL. I never did. But I did find that new targeted therapies were changing the once-dismal trajectory of this disease. When it was time to receive treatment after my watch-and-wait period, I found a groundbreaking clinical trial combining three new nonchemotherapy drugs that was being offered in Ohio and Germany. While I love me some schnitzel, Ohio was more practical for this Maryland mom. I had three children (ages 12, 11 and 5) waiting for me at home and a more-than-full-time job as well as volunteer responsibilities. I would need to leave it all behind to receive treatment, sometimes weekly, over 16 months. I was overwhelmed. How would I tell my children that I have cancer without causing
pain? The C-word comes with a distinct heaviness, an emotional bell you cannot un-ring. Plus, they had just witnessed the long difficult journey of my mother’s fight with terminal ovarian cancer. She had passed just weeks before my diagnosis. I wanted to shield them from the heartache and helplessness I felt while she endured cancer. I knew firsthand what they were about to feel, Sonia Dolinger’s and it wasn’t entire family pleasant. I pays it forward phrased it for others with cancer. with a falsely confident smile and delicate ambiguity for their young minds. I wanted them to know that, although I would be coming and going over these months, I would be OK, and they would be OK too. We’d get through it together. I had complex and painful side effects. At home, I was bedridden. My husband became my caregiver, taking over everything I normally did on top of his very full work plate, while worrying endlessly for my welfare. We dropped the ball on well doctor visits and forgot social engagements. Over two years, I saw only one of my son’s football games. We downsized to an easierto-manage home, giving us financial breathing room, as I was physically and mentally
24 CancerHealth SUMMER 2021 cancerhealth.com
unable to work and unsure whether or when I could possibly return. I’m happy to say that I’ve recently rejoined the workforce. I started a meal delivery business and donate proceeds to two patient-focused nonprofits. In the end, I came through treatment battered and bruised but had scored a complete remission. It’s seven years since I was diagnosed! My entire family grew emotionally. My husband and children are more empathetic to those facing struggles of all kinds and motivated to help others in need. We’ve raised more than $60,000 to pay it forward to the next family facing cancer. We really did get through this together. ■ For more first-person essays: cancerhealth.com/stories
COURTESY OF SONIA DOLINGER
Sonia Dolinger, 46, lives in Annapolis, Maryland, where she runs a meal delivery business and fundraises for cancer research. She has chronic lymphocytic leukemia.
BY CAROLINE TIEN
YOUR TEAM
Breathing Better
Respiratory therapist Mark Courtney, RRT, is a manager of the American Lung Association’s Lung HelpLine. What medical role does a respiratory therapist play? We are physician assistants who work closely with pulmonologists or other physicians to meet the respiratory needs of people who have chronic lung disease.
COURTESY OF MARK COURTNEY
What are common issues in people with lung cancer? Lung tissue is very vulnerable to cancer and its treatments, especially surgery and radiation. Some cancers near large airways can partially or completely block air movement. The most common symptom is shortness of breath. Also, after lung surgery, some people have phantom pains that come and go. How do you assist after lung cancer treatment? We look for coughing and breathing problems as well as swallowing issues during and after treatment. By encouraging deep breathing and coughing, we may help patients avoid post-surgery complications such as pneumonia or lung collapse. Supplemental oxygen and breathing treatments, such as use of an inhaler or CPAP machine, may also help, especially in someone with an underlying lung disease, such as asthma or COPD [chronic obstructive pulmonary disease]. We work with nursing staff to get people up and moving as soon after Who’s on your team? cancerhealth.com/team
surgery as they are able to prevent complications. And we help assess needs, such as home oxygen, for discharge planning. How does the American Lung Association help? The Lung HelpLine is a dedicated telephone helpline— 800-LUNG-USA—where we talk, and we also have [online] chats and email. We get calls from people with lung cancer quite often. Some people have concerns over CT scan results; others with later-stage disease may call to talk about treatment options. We often talk to people about how to set up home oxygen and how to be their own advocate. What about COVID-19 risks? If you’re going through treatment for lung cancer and you get infected with the coronavirus, you’re at higher risk for more severe disease. We advise everybody to strongly consider getting a COVID-19 vaccine. What advice do you commonly give your patients? We’re not physicians, but we are always giving people a list of things to ask their doctor about, things that we know can help. We send information or steer them to the right medical resources on the internet—either our website (Lung.org) or other
Respiratory therapist Mark Courtney, RRT, helps people with lung cancer manage breathing.
trusted websites. We share tips for dealing with lingering pain, such as using a heating pad, soaking in a hot tub or getting a massage. Do you help people who have other kinds of cancer? Yes, especially if they need to be admitted to the hospital. Some people undergoing treatment for other cancers may have weakened immune systems, causing respiratory infections, such as pneumonia. Patients with oral cancer may require special airways, like a tracheostomy tube or laryngectomy tube, both of which require airway management. What do you find most fulfilling about your work? What’s rewarding are the patient interactions. We don’t rush any calls. This has given me all the time I need to make connections with people and make sure that I’m doing as much as I can to answer their questions. ■
cancerhealth.com
SUMMER 2021
CancerHealth 27
GOOD STUFF
BY KATE FERGUSON
FINALLY, SUMMER!
Chemotherapy agents can sometimes trigger a darkening of the skin known as hyperpigmentation. Made exclusively for skin of color, the Yelle Skin Care five-piece system (Awakening Milk & Honey Cleanser 4 oz.; Awakening Milk & Honey Toner, 4 oz.; Awakening Daily Moisturizer, 2. oz.; A-Dream Brightening Eye Cream, 1 oz.; and Treatment Serum, 1 oz.) for either oily, dry or normal skin ($129.99) is made from a plant-based formula containing soothing aloe vera, which is gentle on sensitive skin and helps fade dark spots.
Cancer survivor Cynthia Hayes felt fearful, anxious and isolated when she was diagnosed with an aggressive form of uterine cancer. Her emotional turmoil resulted in conversations with friends and acquaintances, which generated insights about feelings shared by cancer patients and led her to collaborate with a psychotherapist and two oncologists on The Big Ordeal: Understanding and Managing the Psychological Turmoil of Cancer (Kindle, $9.99; paperback, $19.95). The book features interviews with more than 100 patients, caregivers and cancer care experts. Hayes hopes the book will help readers better understand and manage their cancer experience and encourage them throughout their journey.
A clean home environment is important for cancer patients, who may be especially susceptible to infections and allergies. Designed to capture harmful dust and allergens, the NuWave OxyPure Smart Air Purifier with a HEPA filter ($599) eliminates almost 100% of potentially deadly viruses and bacteria. The energy-efficient unit automatically connects to Wi-Fi and allows users to control and monitor air quality on their smartphone or tablet from anywhere.
28 CancerHealth SUMMER 2021 cancerhealth.com
For many individuals undergoing chemotherapy, ice cream is a godsend for managing side effects. The cool, creamy dessert can help with nausea and soothes mouths and throats made sore by chemo and radiation. Ice cream is also calorie-rich, which helps those struggling with weight loss put on needed pounds. Tillamook Ice Cream (various flavors, 1.75 qt., $6.49), one of the highest-quality brands around, is made without artificial ingredients.
Vanishing eyebrows? Replace them like cancer survivor Deanna Pai did when she created Volition Mission Brows Eyebrow Replacement (in light and dark brown, $49.99). The glue-on brows (glue included) are sourced from human hair and perfect for when eyebrow pencils fail. Thirty percent of proceeds benefit the Ulman Cancer Fund, a program that helps support young adults fighting cancer.
Find more products to make life easier: cancerhealth.com/good-stuff
(AIR FILTER) COURTESY OF NUWAVE, LLC; (THE BIG ORDEAL) COURTESY OF GREENLEAF BOOK GROUP
Plan a trip, manage treatment side effects, eat something delicious and nourish your spirit.
FIND US AT
CancerHealth.com TM
• A daily resource for people living with and affected by cancer • Clear, comprehensive prevention and treatment information • News, personal stories, blogs, community forums and more • Sign up online to receive free treatment and lifestyle email newsletters Follow us on:
A SMART + STRONG PUBLICATION Award-winning consumer health care information
CancerHealth_House_Ad_2020_new_HY.indd 25
11/27/20 2:54 PM POZ19603-00_CancerHealth_House_Ad_2020.pgs 11.27.2020 14:58
RESOURCES
BY ALICIA GREEN
Melanoma Skin Cancer NEW TREATMENTS HAVE IMPROVED OUTCOMES FOR THIS CANCER. Find out the latest info, get support and connect with survivors.
Cancer.net
aimatmelanoma.org
cancer.net
AIM provides comprehensive resources for patients, families and caregivers as well as access to medical experts who can help address melanoma-related concerns, such as a recent diagnosis, treatment, clinical trials and survivorship. The Peer Connect program matches newly diagnosed patients and their loved ones with melanoma survivors to provide emotional and practical support.
Run by the American Society of Clinical Oncology, this patient information website provides medically reviewed, updated information about types of treatment, clinical trials and research. Learn what questions to ask your doctor and about coping with treatment, follow-up care and survivorship. Melanoma Research Alliance (MRA) curemelanoma.org
American Melanoma Foundation (AMF) melanomafoundation.org
Founded by melanoma patients and their relatives, AMF provides patient education and advocacy and facilitates support groups. The website features a range of melanoma information, including types, disease stages and treatment options. CancerCare
MRA’s goal is to end suffering and death from melanoma by supporting research, with an eye toward advancing cures for all patients and improving prevention. MRA also offers newly diagnosed patients information on choosing a doctor, understanding health insurance and getting a second opinion. Those in treatment can learn about the latest therapies under investigation as well as clinical trials.
cancercare.org
At CancerCare, patients can learn to cope with their disease as well as connect with oncology social workers via the Hopeline—800-813-HOPE (4673). Patients can also learn if they qualify for financial assistance for cancer-related costs and join a melanoma patient support group.
Melanoma Research Foundation (MRF) melanoma.org
Gain insight on what happens after a melanoma diagnosis with MRF’s Melanoma Patient Guide. You’ll learn what questions to ask your doctor, what treatment is like depending on your cancer stage and how to manage side
30 CancerHealth SUMMER 2021 cancerhealth.com
effects. MRF’s Patient Forum allows patients and caregivers to connect with one another for support. Find financial assistance, and learn how to manage being a melanoma survivor. What’s more, the Ask the MRF Nurse resource allows you to speak to a nurse. National Cancer Institute (NCI) cancer.gov
Visit NCI’s website for treatment information and the latest advances in skin cancer research. Find health services and learn how to manage costs and how to live with cancer. Survivors can learn about follow-up medical care, the latest side effects of cancer treatment and questions to ask their doctor after completing treatment. Caregivers will find resources on adapting to their new role and how to take care of themselves. Skin Cancer Foundation skincancer.org
This organization provides information about prevention, detection and treatment for skin cancer of all kinds, including melanoma. A related Facebook community allows patients to share their experiences and offer support to others with skin cancer. Read the Sun and Skin News blog for patient stories, advice from experts and more. Discover more resources: cancerhealth.com/resources
ISTOCK
AIM at Melanoma
Protect
From COVID-19. I GOT MY COVID-19 VACCINE!
Getting a COVID-19 vaccine adds one more layer of protection. A safe and effective vaccine to protect against COVID-19 is now available. Learn more: cdc.gov/coronavirus/vaccines
PZA530832.pgs 05.19.2021 16:20
ESA
HOW TO
BY KATE FERGUSON
Who says you can’t travel? Plan carefully and take a trip to a destination your heart desires.
Travel With Cancer A getaway might be just what the doctor ordered.
TAKING A TRIP IS NOT AUTOMATICALLY OFF-LIMITS JUST BECAUSE you’re being treated for cancer or have recently completed treatment—even amid the COVID-19 pandemic. Short or long breaks can help support and speed your recovery. And for people with advanced cancer, travel is often high on their bucket list. According to the Centers for Disease Control and Prevention, people who are fully vaccinated against COVID-19 can safely travel within the United States, and even some international destinations are low risk. While cancer and its treatment may impair immunity, especially at certain times, such as during chemotherapy, many people in treatment can travel safely. Talk with your doctors. Ask members of your care team how they feel about you traveling. Ask how to safeguard your health—taking into account COVID-19 protocols and other precautions—what amount of meds to take and how to fill prescriptions while you are away. Consider brief trips. These may be best as your body recovers from treatment. For example, short-term cancer retreats can provide healing benefits for those with cancer as well as for survivors, caregivers and family members. Determine what you need. Summarize your treatment plan. Include a list of medications and requirements for storing them as well as any allergies and special equipment or protective items you might need, such as medicalgrade masks and manufacturers’ cards for devices implanted in your body. Pack a copy of your medical records with contact information in the event of an emergency. Flying? Ask the airline what you can carry on board. Maximize comfort. For short distances, travel by train or car can be more comfortable and relaxing than flying. Think reclining seats, more legroom and the option to take rest breaks and stay at places along the way. Take advantage of passenger services. For example, if you’re flying, ask about priority boarding, and call the TSA Cares helpline toll-free (855-787-2227) to find out about alternative screening options. ■
32 CancerHealth SUMMER 2021 cancerhealth.com
1
Talk with your care team about safety and timing.
2
Short-term trips may be better during recovery.
3
List all the key medical items you’ll be taking.
4
Carry a copy of your health records with you. Include contact info in case of an emergency.
5
For the most comfort during short trips, travel either by train or by car.
6
Use passenger support services when available.
ISTOCK
6 TRAVEL TIPS
SURVEY
Do you trust that your doctor is working in your best interest? ❑ Yes ❑ No How often are you concerned about being treated unfairly when seeking medical care? ❑ Always ❑ Seldom ❑ Sometimes ❑ Never
EQUITY IN CARE Cancer affects people of all races, but Black people have the highest death rate and lowest survival rate of any racial group for most cancers, according to the American Cancer Society. Health disparities due to racism, homophobia, classism, ableism, ageism or other factors can affect both a person’s ability to access care and the quality of the care they receive. Take our survey to let Cancer Health know about your experience with equity in health care. How far do you have to travel to see your primary health care provider? ❑ Less than 10 miles ❑ 25–50 miles 10–25 miles ❑ ❑ More than 50 miles How far do you have to travel to see your cancer specialist or for cancer treatment? ❑ Less than 25 miles ❑ 50–100 miles ❑ 25–50 miles ❑ More than 100 miles
ISTOCK
Have you ever had difficulty accessing care or treatment due to your… Race or ethnic background? ❑ Yes ❑ No Gender? ❑ Yes ❑ No Sexual orientation? ❑ Yes ❑ No Physical disability? ❑ Yes ❑ No Appearance? ❑ Yes ❑ No Level of education? ❑ Yes ❑ No Ability to speak English? ❑ Yes ❑ No Financial situation? ❑ Yes ❑ No Housing situation? ❑ Yes ❑ No Do you feel that your doctor understands your health care needs? ❑ Yes ❑ No
Are you able to afford the cost of your health insurance and medical care? ❑ Yes ❑ No Has the cost of medical care or lack of health insurance ever prevented you from getting cancer treatment? ❑ Yes ❑ No How would you rate the overall quality of your health care? ❑ Excellent ❑ Fair Good ❑ ❑ Poor What year were you born? _ _ _ _ What is your gender? ❑ Male ❑ Transgender ❑ Female ❑ Other What is your current level of education? ❑ Some high school ❑ Bachelor’s degree ❑ High school graduate ❑ Graduate or professional degree ❑ Some college 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.
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
CancerHealthAD-3.indd 1
CAN528335.pgs 02.12.2021 11:45
ESA