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GRACE IN ADVERSITY
12 Years With Lung Cancer
Just Diagnosed? Start Here! Getting Financial Help Spiritual Care
Beyond Chemotherapy Finding Your MBC Community An Acute Myeloid Leukemia Diary Exercise Matters
Giancarlo Oviedo
For adults and children 12 years of age and older with chronic graft-versus-host disease (GVHD) who have taken one or two types of treatments and they did not work well enough
When other treatments haven’t worked well enough,
Take your chronic GVHD therapy in a different direction After a stem cell transplant, some patients develop chronic GVHD. It happens when donor cells (the graft) see their new home in your body (the host) as foreign and launch an attack. Many people with chronic GVHD start out with another type known as acute GVHD, which tends to happen earlier after transplant. Not all patients respond to their initial treatment prescribed for chronic GVHD. That’s when your care team may discuss options like Jakafi® (ruxolitinib) with you. Jakafi is a type of medicine called targeted therapy. Jakafi helps to reduce the activity of proteins involved in the inflammation that is part of chronic GVHD. In turn, Jakafi may help to reduce your signs and symptoms of chronic GVHD. Ask your Healthcare Professional if Jakafi may be right for you.
To learn more, visit Jakafi.com/cGVHDregister to sign up for information and resources.
Be sure to report any new or changing symptoms of chronic GVHD to your transplant team right away. Learn about symptoms at Jakafi.com/AboutChronicGVHD.
At IncyteCARES for Jakafi, our team can help you understand your insurance coverage, explore financial assistance options, and provide ongoing support. Visit IncyteCARES.com.
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INDICATIONS AND USAGE Jakafi is used to treat adults and children 12 years of age and older with chronic graft-versus-host disease (GVHD) who have taken one or two types of treatments and they did not work well enough.
IMPORTANT SAFETY INFORMATION Jakafi can cause serious side effects, including: Low blood counts: Jakafi® (ruxolitinib) may cause low platelet, red blood cell, and white blood cell counts. If you develop bleeding, stop taking Jakafi and call your healthcare provider. Your healthcare provider will do a blood test to check your blood counts before you start Jakafi and regularly during your treatment. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your healthcare provider right away if you develop or have worsening symptoms such as unusual bleeding, bruising, tiredness, shortness of breath, or a fever. Infection: You may be at risk for developing a serious infection during treatment with Jakafi. Tell your healthcare provider if you develop any of the following symptoms of infection: chills, nausea, vomiting, aches, weakness, fever, painful skin rash or blisters. Cancer: Some people have had certain types of non-melanoma skin cancers during treatment with Jakafi. Your healthcare provider will regularly check your skin during your treatment with Jakafi. Tell your healthcare provider if you develop any new or changing skin lesions during treatment with Jakafi. Increases in cholesterol: You may have changes in your blood cholesterol levels during treatment with Jakafi. Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking Jakafi, and as needed. Increased risk of major cardiovascular events such as heart attack, stroke or death in people who have cardiovascular risk factors and who are current or past smokers while using another JAK inhibitor to treat rheumatoid arthritis: Get emergency help right away if you have any symptoms of a heart attack or stroke while taking Jakafi, including: discomfort in the center of your chest that lasts for more than a few minutes, or that goes away and comes back, severe tightness, pain, pressure, or heaviness in your chest, throat, neck, or jaw, pain or discomfort in your arms, back, neck, jaw, or stomach, shortness of breath with or without chest discomfort, breaking out in a cold sweat, nausea or vomiting, feeling lightheaded, weakness in one part or on one side of your body, slurred speech Increased risk of blood clots: Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) have happened in people taking another JAK inhibitor for rheumatoid arthritis and may be life-threatening. Tell your healthcare
provider right away if you have any signs and symptoms of blood clots during treatment with Jakafi, including: swelling, pain, or tenderness in one or both legs, sudden, unexplained chest or upper back pain, shortness of breath or difficulty breathing Possible increased risk of new (secondary) cancers: People who take another JAK inhibitor for rheumatoid arthritis have an increased risk of new (secondary) cancers, including lymphoma and other cancers. People who smoke or who smoked in the past have an added risk of new cancers. The most common side effects of Jakafi include: for certain types of myelofibrosis (MF) and polycythemia vera (PV) – low platelet or red blood cell counts, bruising, dizziness, headache, and diarrhea; for acute GVHD – low platelet counts, low red or white blood cell counts, infections, and swelling; and for chronic GVHD – low red blood cell or platelet counts and infections including viral infections. These are not all the possible side effects of Jakafi. Ask your pharmacist or healthcare provider for more information. Call your doctor for medical advice about side effects. Before taking Jakafi, tell your healthcare provider about: all the medications, vitamins, and herbal supplements you are taking and all your medical conditions, including if you have an infection, have or had low white or red blood cell counts, have or had tuberculosis (TB) or have been in close contact with someone who has TB, had shingles (herpes zoster), have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had cancer, are a current or past smoker, had a blood clot, heart attack, other heart problems or stroke, or have any other medical condition. Take Jakafi exactly as your healthcare provider tells you. Do not change your dose or stop taking Jakafi without first talking to your healthcare provider. Women should not take Jakafi while pregnant or planning to become pregnant. Do not breastfeed during treatment with Jakafi and for 2 weeks after the final dose. Please see the Patient Brief Summary of the Full Prescribing Information on the next page. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. You may also report side effects to Incyte Medical Information at 1-855-463-3463.
Jakafi and the Jakafi logo are registered trademarks of Incyte. © 2021, Incyte Corporation. MAT-JAK-02596 09/21
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Summary of Important Information About Jakafi® Please read this summary carefully and then talk with your healthcare provider about Jakafi (JAK-ah-fye). No advertisement can provide all the information needed to determine if a drug is right for you or take the place of careful discussions with your healthcare provider. Only your healthcare provider has the training to weigh the risks and benefits of a prescription drug.
What is Jakafi? Jakafi is a prescription medicine used to treat: • adults with certain types of myelofibrosis (MF). • adults with polycythemia vera (PV) who have already taken a medicine called hydroxyurea and it did not work well enough or they could not tolerate it. • adults and children 12 years of age and older with acute graft-versus-host disease (aGVHD) who have taken corticosteroids and they did not work well enough. • adults and children 12 years of age and older with chronic graft-versus-host disease (cGVHD) who have taken one or two types of treatments and they did not work well enough. It is not known if Jakafi is safe or effective in children for treatment of myelofibrosis or polycythemia vera.
• Jakafi may also be given through certain nasogastric tubes. ż Tell your healthcare provider if you cannot take Jakafi by mouth. Your healthcare provider will decide if you can take Jakafi through a nasogastric tube. ż Ask your healthcare provider to give you specific instruction on how to properly take Jakafi through a nasogastric tube. • If you miss a dose of Jakafi, take your next dose at your regular time. Do not take 2 doses at the same time. • If you take too much Jakafi call your healthcare provider or go to the nearest hospital emergency room right away. • You will have regular blood tests during your treatment with Jakafi. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests.
What are the possible side effects of Jakafi? Jakafi can cause serious side effects including:
Low blood cell counts. Jakafi may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia), and low white blood cell counts (neutropenia). If you develop bleeding, stop Jakafi and call your healthcare provider. Your healthcare provider will do a blood test to check your blood cell counts before you start Jakafi and regularly during your treatment with Jakafi. Tell your healthcare provider right away if you develop or have worsening of any of these symptoms: Before taking Jakafi, tell your healthcare • shortness of breath • unusual bleeding provider about all of your medical conditions, • bruising • fever including if you: • tiredness • have an infection Infection. You may be at risk for developing a serious • have or have had low white or red blood cell counts infection during treatment with Jakafi. Tell your • have or had tuberculosis (TB), or have been in close healthcare provider if you develop any of the following contact with someone who has TB symptoms of infection: • have had shingles (herpes zoster) • chills • vomiting • have or had hepatitis B • aches • weakness • have or have had liver problems • fever • painful skin rash • have or have had kidney problems or are on dialysis. • nausea or blisters If you are on dialysis, Jakafi should be taken after Cancer. Some people have had certain types of your dialysis non-melanoma skin cancers during treatment with • have a high level of fat in your blood (high blood Jakafi. Your healthcare provider will regularly check cholesterol or triglycerides) your skin during your treatment with Jakafi. Tell • have had cancer in the past your healthcare provider if you develop any new or • are a current or past smoker changing skin lesions during treatment with Jakafi. • have had a blood clot, heart attack, other heart Cholesterol increases. You may have changes in your problems or stroke blood cholesterol levels during treatment with Jakafi. • are pregnant or plan to become pregnant. It is not Your healthcare provider will do blood tests to check known if Jakafi will harm your unborn baby your cholesterol levels about every 8 to 12 weeks • are breastfeeding or plan to breastfeed. It is not after you start taking Jakafi, and as needed. known if Jakafi passes into your breast milk. Do not Increased risk of major cardiovascular events such breastfeed during treatment with Jakafi and for as heart attack, stroke or death in people who have 2 weeks after the final dose cardiovascular risk factors and who are current or Tell your healthcare provider about all the past smokers while using another JAK inhibitor to medicines you take, including prescription and treat rheumatoid arthritis. over-the-counter medicines, vitamins and herbal supplements. Taking Jakafi with certain other medicines Get emergency help right away if you have any symptoms of a heart attack or stroke while taking Jakafi, including: may affect how Jakafi works. Know the medicines • discomfort in the center of your chest that lasts for you take. Keep a list of them to show your healthcare more than a few minutes, or that goes away and provider and pharmacist when you get a new medicine. comes back • severe tightness, pain, pressure, or heaviness in How should I take Jakafi? your chest, throat, neck, or jaw • Take Jakafi exactly as your healthcare provider • pain or discomfort in your arms, back, neck, jaw, tells you. or stomach • Do not change your dose or stop taking Jakafi • shortness of breath with or without chest discomfort without first talking to your healthcare provider. • breaking out in a cold sweat • You can take Jakafi with or without food.
• nausea or vomiting • feeling lightheaded • weakness in one part or one side of your body • slurred speech Increased risk of blood clots. Blood clots in the veins of your legs (deep vein thrombosis, DVT) or lungs (pulmonary embolism, PE) have happened in people taking another JAK inhibitor for rheumatoid arthritis and may be life-threatening. • Tell your healthcare provider right away if you have any signs and symptoms of blood clots during treatment with Jakafi, including: ż swelling, pain or tenderness in one or both legs ż sudden, unexplained chest or upper back pain ż shortness of breath or difficulty breathing Possible increased risk of new (secondary) cancers. People who take another JAK inhibitor for rheumatoid arthritis have an increased risk of new (secondary) cancers, including lymphoma and other cancers. People who smoke or who smoked in the past have an added risk of new cancers. The most common side effects of Jakafi in adults with certain types of MF and PV include: • low platelet counts • low red blood cell counts • bruising • dizziness • headache • diarrhea The most common side effects of Jakafi in people with aGVHD include: • low red blood cell counts • low platelet counts • low white blood cell counts • infections • swelling The most common side effects of Jakafi in people with cGVHD include: • low red blood cell counts • low platelet counts • infections, including viral infections These are not all of the possible side effects of Jakafi. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Incyte Corporation at 1-855-463-3463. The risk information provided here is not comprehensive. To learn more, talk about Jakafi with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at www.jakafi.com. Manufactured for: Incyte Corporation, 1801 Augustine Cut-off, Wilmington, DE 19803 Revised: September 2021 PLR-JAK-00055 Jakafi is a registered trademark of Incyte. All rights reserved. U.S. Patent Nos. 7598257; 8415362; 8722693; 8822481; 8829013; 9079912; 9814722; 10016429 © 2011-2021 Incyte Corporation. For more information call 1-855-463-3463 or go to www.jakafi.com.
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CONTENTS
E xclusively on
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
Faith, family and his new love sustain Giancarlo Oviedo.
Basics
Whether you’re newly diagnosed or a long-term survivor, check out our Basics section on cancer treatment, managing side effects and much more. cancerhealth.com/basics
Science News
COVER AND THIS PAGE: (OVIEDO) BILL WADMAN; (HEART SPEECH BUBBLE, IV TREATMENT) ISTOCK
Learn about the latest treatment advances, cure research and conference news. cancerhealth.com/science-news
Cancer Health Digital Scan the QR code (left) with your smartphone to check out the digital issue of Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.
16 FINDING GRACE IN ADVERSITY Giancarlo Oviedo, diagnosed with lung cancer as a college freshman, has been defying the odds for 12 years. BY JENNIFER COOK 22 BEYOND CHEMOTHERAPY A new generation of precision cancer therapies are easier to tolerate than traditional treatment. BY LIZ HIGHLEYMAN 4 From the Editor Everything Else 6 Care & Treatment COVID-19 vaccine boosters | lung cancer in never smokers | exercise for chemo brain | the latest drug approvals 8 News Katie Couric’s regret | oncology hospital at home | considering a new treatment? ask this first | mocktail recipe | do you really know what immunotherapy is? 10 Voices Deltra James, 35, who has five children and metastatic breast cancer, has found her true community. 13 Basics Just diagnosed? Start here.
14 Diary How ex-triathlete Siri Lindley recovered from acute myeloid leukemia 24 Resources How to get financial help 26 Life With Cancer Doreen Zetterlund gets inspiration from William Shakespeare. 28 Good Stuff Cancer care gift boxes, icy massage, a dating app and more 30 Your Team Palliative care chaplain 32 Solutions Get paid when you can’t work. 33 Reader Survey Quality of life
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CancerHealth 3
FROM THE EDITOR
Cancer Health TM
Everything Else
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To protect your whole self, you’ll need a plan (see “Just Diagnosed? Start Here,” page 13). By all means, let it include self-care (Good Stuff, page 28). And don’t neglect your finances; see Resources (page 24) and Solutions (“Get Paid When You Can’t Work,” page 32). Need to talk with someone about the challenges you’re facing? Don’t forget about chaplaincy (Your Team, page 30). How has cancer affected your quality of life? Let us know by taking our Reader Survey (page 33).
SMART + STRONG PRESIDENT AND COO Ian E. Anderson EDITORIAL DIRECTOR Oriol R. Gutierrez Jr. EXECUTIVE EDITOR Bob Barnett CHIEF TECHNOLOGY OFFICER Christian Evans VICE PRESIDENT, INTEGRATED SALES Diane Anderson INTEGRATED ADVERTISING MANAGER Jonathan Gaskell INTEGRATED ADVERTISING COORDINATOR Sarah Pursell SALES OFFICE 212-938-2051 sales@cancerhealth.com BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com CDM PUBLISHING, LLC CHIEF EXECUTIVE OFFICER Jeremy Grayzel CONTROLLER Joel Kaplan
BOB BARNETT Editor-in-Chief bobb@cancerhealth.com Twitter: @BobCancerHealth
Cancer Health (ISSN 2688-6200) Issue No. 16. Copyright © 2022 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and Cancer Health™ are registered trademarks of CDM Publishing, LLC.
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A CANCER DIAGNOSIS FOCUSES the mind. What matters most now is treatment. Work with your medical team to identify the most effective plan to send your cancer packing, and then get through it as best you can. Everything else can wait. But everything else, of course, won’t wait. Everything else is your life: your physical and emotional health, your family and friends, your ability to do what you need to do and want to do, your financial stability, your sense of self. That’s why patient-centered care seeks the best outcome with the least disruption to your quality of life. It’s not either/or—in some cases, the most effective treatments may be the least disruptive. “Beyond Chemotherapy” (page 20) explores how a new generation of precision cancer medicine, including immunotherapy and targeted therapies, may be easier to tolerate than traditional treatment. Discover more advances in Care & Treatment (page 6) and News (page 8). How will you build resiliency? Each of us is unique. Giancarlo Oviedo, 29, our cover subject (page 16), diagnosed with lung cancer at age 17, finds strength in family, faith and love. Deltra James, who has five children and metastatic breast cancer, gets stronger by giving back. Doreen Zetterlund is mastering the science of her cancer—with inspiration from Shakespeare (page 26). Siri Lindley is recovering from leukemia with the love of her wife and the gentle power of her horse (page 14).
EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman SENIOR EDITOR Kate Ferguson DEPUTY EDITOR Trent Straube NEWS WRITERS Sukanya Charuchandra, Jeanette Pinnace COPY CHIEF Joe Mejía ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; Timothy Henrich, MD; Carl June, MD; Leigh Leibel, MSc; Yung Lie, PhD; Gilberto Lopes, MD; Jennifer L. McQuade, MD; Amelie Ramirez, DPH; Hope Rugo, MD; Kelly Shanahan, MD; Carla Tardif FEEDBACK Email: info@cancerhealth.com
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CARE & TREATMENT
BY LIZ HIGHLEYMAN
COVID-19 VACCINE BOOSTERS While most cancer patients respond well to Pfizer-BioNTech and Moderna COVID-19 vaccines, some people do not produce enough antibodies after two doses. But getting a third shot may do the trick. Some blood cancers, like chronic lymphocytic leukemia and multiple myeloma, affect B cells, which produce antibodies. What’s more, some patients take targeted therapies, such as CD20 or BTK inhibitors, that impair B-cell activity. While chemotherapy does not directly target B cells, it indiscriminately kills fast-growing cells, including stem cells in the bone marrow that give rise to all blood cells. A recent study showed that more than half of blood cancer patients who did not have detectable antibodies against SARS-CoV-2 (the coronavirus that causes COVID-19) after two vaccine doses were able to produce antibodies after a third dose; others with low antibody levels saw an increase. Another study showed a threefold increase in neutralizing antibodies after a booster in people receiv-
Here are the latest new cancer drugs approved by the Food and Drug Administration:
als who are not fully protected by vaccines, post-exposure prophylaxis and pre-exposure prophylaxis using monoclonal antibodies—and possibly oral antivirals in the near future— could offer a lifeline. “We encourage blood cancer patients to take every measure to protect themselves from COVID-19 by getting vaccinated and continuing to take preventative precautions,” says Gwen Nichols, MD, of the Leukemia & Lymphoma Society. And when others get vaccinated, they are not only protecting themselves but are also helping to protect these patients.
• Exkivity (mobocertinib) for advanced non-small-cell lung cancer • Scemblix (asciminib) for chronic myeloid leukemia • Tivdak (tisotumab vedotin) for advanced cervical cancer • Welireg (belzutifan) for Von HippelLindau syndrome
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ALL IMAGES: ISTOCK
Now Approved
ing chemotherapy for solid tumors. In August, the Food and Drug Administration and the Centers for Disease Control and Prevention recommended an additional vaccine dose for moderately to severely immunocompromised people, including those being treated for cancer. The agencies later went further, recommending Pfizer-BioNTech and Moderna boosters after six months for people ages 65 and older, younger adults with underlying health conditions— including cancer—and those at high risk for exposure due to their work or living situation. All adults who received the Johnson & Johnson vaccine can get a booster two months after their first shot. However, a third of the patients in the blood cancer study still did not respond even after a third vaccine dose. For individu-
Exercise Helps Chemo Brain Getting the recommended amount of physical activity may help avoid brain fog while undergoing chemotherapy for breast cancer, according to a study in the Journal of Clinical Oncology. Up to three quarters of people with breast cancer report cognitive impairment during chemotherapy. Symptoms of so-called chemo brain may include confusion, poor memory and difficulty concentrating, and they sometimes last long after treatment ends. Elizabeth Salerno, PhD, MPH, of the National Cancer Institute, and colleagues studied the link between exercise and cognition in 580 people with Stage I to III breast cancer. They found that those who met minimum physical activity guidelines before and during chemotherapy had better cognitive function immediately and for six months after treatment. What’s more, people who previously had an active lifestyle and exercised throughout chemotherapy had the best cognitive
performance. Federal guidelines recommend at least 150 minutes of moderateintensity activity or 75 minutes of vigorous activity each week plus muscle-strengthening activities. Getting enough exercise while undergoing treatment can be a challenge due to fatigue and other side effects, but any amount of physical activity is better than none. “Being physically active can actually help reduce fatigue and help with anxiety and depression, and it can improve physical function,” says Salerno.
LUNG CANCER IN NEVER SMOKERS Most never smokers who develop lung cancer have tumor mutations that make them eligible for precision medicine, according to a recent study. At least 10% to 20% of people with lung cancer never smoked, and they appear to have a distinct form of the disease. (See “Finding Grace in Adversity,” page 16). One difference is that it occurs more often in women. Another is that patients are more likely to have so-called driver mutations that spur uncontrolled cell growth—and that can be treated with targeted therapies. Ramaswamy Govindan, MD, of Washington University School of Medicine in St. Louis, and colleagues performed genetic sequencing on 157 lung tumor samples from people with no history of smoking. They found that 78% to 92% For more care and treatment news: cancerhealth.com/science-news
had potentially treatable driver mutations, compared with 50% of tumors from smokers. Available medications target ALK, BRAF, EGFR, KRAS, MET, NTRK, RET and ROS1 mutations. “We found that the vast majority of these patients have genetic alterations that physicians can treat today with drugs already approved for use,” Govindan says. On the other hand, smokers had more mutations overall, making them more likely to benefit from immunotherapy. These findings underscore the importance of tumor genomic testing to help guide treatment and also raise the question of whether lung cancer screening—now recommended for current and former heavy smokers—may be appropriate for never smokers as well.
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NEWS
BY BOB BARNETT
HOSPITAL AT HOME During the COVID-19 pandemic, many people with cancer—and their doctors—discovered the potential of telemedicine. But what if more intensive cancer treatment could take place in the comfort of your own home as well? That’s the “hospital at home” model. Consider chemotherapy infusions. “In the infusion suite, dozens of potentially immunocompromised patients are collocated with a variety of health care providers who may be vectors for SARS-CoV-2 [the virus that causes COVID-19],” write three oncologists in “The Home is the New Cancer Center,” an article in the Journal of the National Comprehensive Cancer Network (NCCN). As an alternative, they describe Christie at Home, a program of The Christie, a large cancer center in Manchester, England. A trained nurse visits people needing certain cancer treatments in their homes; 100% of these patients rated their care
as “excellent.” Cancer Care at Home, a more limited program at Penn Medicine in Philadelphia, has nurses administer 13 cancer drugs that are usually delivered in an outpatient setting to patients in their homes. Even more intensive acute care can sometimes be delivered at home. Huntsman at Home, a program of the Huntsman Cancer Institute at the University of Utah, provides such care for cancer patients who live within 20 miles of the institute. Nurse practitioners and registered nurses visit patients at home, sometimes more than once a day. They monitor symptoms, check heart health, manage oxygen therapy and administer medications, including intravenously. In a study of the program published in the Journal of Clinical Oncology, researchers evaluated 367 patients who qualified for home
Virgin Bermuda Triangle Cutting back on alcohol to reduce your cancer risk, but still want to celebrate? Try this three-juice mocktail from Cook for Your Life (cookforyourlife.org). In a pitcher, mix together two cups of peach juice, 1 cup of orange juice and ½ cup of pomegranate juice, and then add one cup of sparkling water. (Adding water to citrus juices makes them less sugary and much less acidic, which is gentler on sore mouths and throats.) Pour into glasses and garnish with orange slices and, if desired, fresh mint. Makes six servings. Each serving has 56 calories and 12 grams of sugar. © 2021 Fred Hutchinson Cancer Research Center, a 501(c)(3) nonprofit organization
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care. Half were cared for at home, the other half in the hospital. For the at-home group, unplanned hospital stays fell by 55%, visits to the ER fell by 45% and health care costs dropped by 47% over 30 days. While the COVID-19 pandemic has been a catalyst for home care, write the NCCN authors, there is great potential for post-pandemic times as well: “We should leverage this momentum to transform care for our patients.”
Katie’s Regret
(DRINK) COURTESY OF COOK FOR YOU LIFE/FRED HUTCHINSON; (DOCTOR/PATIENT) ISTOCK; (GOING THERE) COURTESY OF LITTLE, BROWN
CONSIDERING A NEW TREATMENT? ASK THIS A majority of clinical trials report that new treatments are more effective than they turn out to be, finds a study in the Journal of the National Comprehensive Cancer Network. Researchers who analyzed 362 industry-sponsored Phase III randomized oncology trials from 2008 to 2017 found that 58% reported false positive results. “A false positive result means that a clinical trial concludes that a drug has efficacy when the drug actually does not prolong survival in a clinically meaningful way,” explains lead researcher Changyu Shen, PhD, an associate professor at Harvard Medical School at the time this study was conducted. “False positive results may…expose patients to adverse effects of drugs that are unlikely to produce meaningful health gains.” Patients could also miss the optimal window for receiving
other, beneficial treatments while incurring a hefty financial burden, he adds. Shen and colleagues advise a more stringent standard before drug trials even proceed to Phase III. Shen’s advice for people considering a possible new treatment? Ask your oncologist not just about potential benefits and side effects but also about how confident researchers are in the results. “Patients should seek information on the range of survival benefits instead of just an estimate,” he says. “For example, ‘12 months survival benefit’ is not sufficiently informative, [but] ‘The survival benefit is somewhere between six and 16 months,’ adds more information. It means that with confidence, the survival benefit is at least six months and no more than 16 months for the average patient.”
In her memoir, Going There, former Today show coanchor Katie Couric reflects on the last days of her husband, Jay Monahan, who died of colon cancer at age 42 in 1998. “I did everything I could do to keep Jay alive,” she writes. “Looking back, I wish I had done a better job helping him die.” While glad she pursued every therapeutic opportunity, in an interview with Terry Gross on the WHYY/NPR radio show Fresh Air, Couric regretted not being “brutally honest” with her husband about his poor prognosis. If she had been, she writes, “I think maybe he would have done a video for Ellie and Carrie [their daughters], like Michael Keaton did in his movie called My Life.” After Monahan’s death, Couric cofounded Stand Up To Cancer and has dedicated herself to raising awareness about colorectal cancer, including prevention through screening.
Proportion of cancer patients who correctly describe how immunotherapy works (“activates the immune system to kill cancer cells”). CareAcross, a platform providing education for cancer patients, conducted the survey among 5,589 members, primarily in the United Kingdom and Europe. About half of the respondents, who were diagnosed with breast, lung, prostate or colorectal cancer, answered “not sure/do not know.” Said study author Paris Kosmidis, MD, “It is essential for these individuals to be well informed because [immunotherapy] is a complex treatment that is too often mistaken for a miracle cure—and the more they know about it, the better the communication with their medical team and thus the better their outcomes are likely to be.” The study was reported at the 2021 ESMO Congress 2021. —Sukanya Charuchandra Get more cancer news: cancerhealth.com/news
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VOICES
BY DELTRA JAMES
Community WITH JUST THREE WORDS— You have cancer—I was suddenly transported to this island, separate from the land of the healthy and those who get to carry on living as if they’ll be around forever. It was the summer of 2019, and I had been diagnosed with breast cancer. I’d never felt so alone. I quickly realized, however, that my family and closest friends were joining me here. Soon, I allowed myself to connect with the other members of Cancer Land and started to feel far less alone. These were my people now, the ones who understood what I was about to go through. As the saying goes, it’s the worst club, but it has the best members. A few weeks later, though, I learned that I had Stage IV metastatic breast cancer (MBC) de novo, meaning it wasn’t a recurrence. It just showed up throughout my body, full-blown. Wrapping your mind around a diagnosis like mine isn’t easy. It takes time, and, with five children, time isn’t something I have a lot of. My feelings of isolation grew. Now, even on this island with others experiencing cancer, I felt like part of an outcast group. This is the experience of many
of us living with MBC. It’s easy to feel the disconnect even from other cancer patients who are early stagers and focused on getting to survivorship. I don’t get to leave this cancer island. I’m stuck. I can make the best of life here, but I don’t get to leave. My family and friends gathered around me, my therapist helped me navigate my feelings, my children’s therapist helped them navigate their own and virtual support groups have provided me advice—medical, personal, mental, emotional. Still, I needed more. Those of us who live with MBC need our own spaces. We need to be able to share openly and without fear of making others uncomfortable. While others with cancer may focus on what they’ll do after treatment, we know that when we’re done with treatment, that usually means we are exiting this life. That’s what we need to discuss with our families. I did find communities that truly reflect my situation. And when I did, a funny thing happened. I realized that I not only needed those communities but wanted to reach out and help
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others. Now, Deltra James and her five it’s my time to daughters all start giving found support. back. Since I know what community has done for me, I desire it for every other cancer patient, especially the young, the people of color and the late stagers like myself. I got involved with For the Breast of Us, an organization that focuses on the needs of women of color affected by breast cancer. They are intentional about making space for those living with MBC. A new project I am excited to be a part of, Project Life MBC, is creating that space we so desperately need. It’s a virtual wellness house just for us, focusing on our unique physical, emotional, financial, social and spiritual needs. I am mentoring those needing a hand to hold as they navigate their own diagnosis. To me, it feels like building a cozy fire on this cancer island and inviting others to come connect and feel the warmth. ■ For more first-person essays, go to: cancerhealth.com/stories
COURTESY OF DELTRA JAMES/TINA PIROZZOLI
Patient advocate Deltra James, 35, lives in Waterbury, Connecticut, with her five children. She has metastatic breast cancer.
BY BOB BARNETT
BASICS
Newly Diagnosed? Start Here
ISTOCK
Learning that you have cancer can be overwhelming. Take these steps to get the best care. WHEN YOU GET A CANCER diagnosis, your life may feel upended. You may worry about survival, how treatment will affect you and your loved ones, how you’ll pay bills. Even good news can be stressful: With so many new advances, you may face a bewildering amount of information. The first step? Take a deep breath. Find out how quickly you need to make decisions about treatment. You may have more time than you realize. Here’s how to take charge: Educate yourself. Learn about your specific cancer, including its stage and any genetic information that may be used to guide treatment options. Find the best care team. Some cancers can be treated well by a general oncologist or hematologist. But if you have a complex or rare cancer, your local team may work with a specialist in your particular cancer, allowing you to get advanced diagnosis and treatment planning while receiving day-to-day care near home. Consider a second opinion. Getting an evaluation from a different doctor or oncology team is your right and standard practice in medicine. Ask about clinical trials. Your medical team can tell you whether a clinical trial may be appropriate for you. When standard care has drawbacks or is ineffective, a trial can help you To read more Basics: cancerhealth/basics
access the newest therapies. Learn the risks and benefits of your treatment plan. Ask about the purpose of each treatment, how likely it is to work for you and what side effects to expect. Minimize side effects. Pay attention to your symptoms, and let your medical team know about anything that concerns you. Identifying distressing symptoms early may lead to helpful interventions that can allow you to remain on your treatment plan. Medications may prevent nausea from chemotherapy. Complementary therapies, such as acupuncture, massage, yoga and music therapy, available at many cancer centers, may help alleviate specific symptoms while improving your sense of well-being. Safeguard your quality of life. Ask about cancer rehab services, palliative care services (for issues such as pain) and survivor resources. Concerned about anxiety or depression? Request a screening by a mental health professional who can help you find support. Know your insurance. Cancer care can pose serious financial challenges. Protect yourself by learning what your insurance will cover, how to appeal denials and how to catch billing
errors. Ask about working with a financial navigator. Connect to support groups. Ask about cancer-specific support groups where you are treated. Look online too. For many cancers, nonprofit organizations provide medically reviewed information and connect you with people experiencing exactly what you are. Find them here: cancerhealth.com/resources. Create a wellness program. Eating well, exercising and finding healthful ways to handle stress can help keep your body strong and minimize fatigue and other side effects of treatment. Get help from friends and family. It’s fine to ask them for specific help, such as preparing meals, helping around the house, picking up children from school, managing bills or just providing entertaining distraction. Live your life in the present. You are always more than your cancer. ■
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DIARY
AS TOLD TO KATE FERGUSON
An Acute Myeloid Leukemia Diary
A former world champion triathlete, Siri Lindley, 52, lives with her wife Rebekah in Longmont, Colorado. She was treated for acute myeloid leukemia. November 2019 After eight years of training hard to become the number one triathlete in the world, I went for a pre-op for hip replacement surgery. My blood work came back like something was up. Next, I went to UC Health at University of Colorado Anschutz Medical Campus for a bone marrow biopsy, different blood tests and spinal taps. When the results arrived on November 26, the diagnosis was acute myeloid leukemia. I was devastated. My wife, Rebekah, stood next to me listening while the doctor was on speakerphone. Tears flooded her eyes. I felt such love for her and how much she loved me. At that moment, I decided to survive and thrive. December 2019 One of the doctors at UC Health was running a new clinical trial for a type of targeted treatment and an antiviral medication. The goal was to be in this clinical trial until I went into remission, and then I’d go to the hospital for a week of intensive chemo and radiation, and then I would have a bone marrow transplant. For the transplant, my doctor chose to use umbilical cord blood from an amazing donor as well as cells from my sister who had agreed to donate. (Umbilical cord blood is sometimes preferred for bone marrow transplants because it can grow more blood cells and offers patients less risk of rejection, contamination and infection.) While my sister sat in a chair with tubes attached to her for eight hours, my mom stayed with her. Upstairs, I underwent a lung function test, MRIs and other tests to make sure my body could handle what it would be put through. But I did get to go visit her.
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At the end of December, I got another bone marrow biopsy to check where things stood.
From left: Siri Lindley claims victory as a triathlete; with her horse Savannah; and with her wife, Rebekah
January 2020 I started the second round of treatment in the clinical trial and thought about the Believe Ranch and Rescue that we started in 2016. That year, I rescued this amazing horse, Savannah, and we saved 129 horses from slaughter. Many of them were adopted by equine therapy centers around the country. At month’s end, I was in remission. February 2020 I went into the hospital for seven days of intense chemo to prepare for the bone marrow transplant on February 21. The procedure took three or four hours. I chose to be awake for everything. I think that my experience with Savannah helped me to find strength I never knew I had. The first 10 days weren’t painful but pretty intense. Afterward, I was sick and weak and losing weight rapidly. I had no appetite, so I just drank Ensure and tried to get calories in somehow. March 2020 While I was in the hospital, my wife told me we needed to cancel this charity gala we’d been planning for two years. I refused. Rebekah ran the gala, and we raised $400,000 for the horses. I attended via Zoom. After three weeks, I got out of the hospital. But one day later, I got a high fever and had to return for another week.
August 2020 I got off all medications, except for the prophylactic antiviral drug, which I must take for about five years. I was beginning to heal and get my appetite back. September 2020 Now, I only go to the hospital once each month to get a checkup. I started feeling normal again and began eating simple foods, like pasta, bread and Tillamook ice cream, and started putting on weight.
(PAPER) ISTOCK; (ALL OTHERS) COURTESY OF SIRI LINDLEY
April 2020 We rented an apartment in Denver to be close to the hospital. I was healing and very weak, struggling with depression and still had no appetite. I tried to stay positive and walked every day with my mom. When COVID-19 started, I called my doctors and told them I’d feel much safer at my ranch. They allowed me to go home! Being home accelerated my healing because I could see my horses and go outside to cuddle with them. They calmed my anxiety and reduced my fear. I got pneumonia soon after I got home. It stayed with me for a couple of months, but every day, I exercised outside and built up my strength. May 2020 On May 31, I rode Savannah for the first time since coming home. She took slow little steps as if she knew I was weak and she needed to be careful. After a bone marrow biopsy, I learned I was cancer-free! July 2020 Now, I saw my doctor at the hospital once every two weeks. I did a virtual speech for Tony Robbins at his big event, Unleash the Power Within, my first for him since the diagnosis. It energized me. For the full version of this story: cancerhealth.com/siri
December 2020 Now, I can run for an hour a few days each week. I feel strong and healthy, even though I still need strengthening and healing. When you’re in the middle of recovery, you just think it’s never going to end. February 2021 My pulmonary function test was great! My blood tests were totally normal, and my DEXA scan showed normal bone density. So deeply grateful for my donors, doctors, nurses and loved ones! October 2021 I got back to speaking at Tony Robbins’s events and for my company, Keppler Speakers. We also started doing equine therapy events at the ranch. We teamed with the Small Choices Foundation to bring over 40 cancer patients, survivors and caretakers to our ranch for equine coaching clinics. We will continue this amazing program. To date, my wife and I have saved a total of 173 horses since founding the ranch. We are working to get the Safe Act passed in Washington, which will ban the slaughter of horses permanently. My life coaching has been incredibly fulfilling for me, but my health remains my top priority. I am taking amazing care of myself, which then allows me to thrive in life, relationships and my career.
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Giancarlo Oviedo, diagnosed with lung cancer as a college freshman, has been defying the odds with the help of his faith and family for 12 years.
BY JENNIFER COOK
BILL WADMAN
LIKE MANY YOUNG SOUTH AMERICANS, GIANCARLO OVIEDO dreamed of becoming a professional soccer player. He first played the sport in his native Peru and kept it up when his family emigrated to the United States and settled in New York City in 2000 when he was 8 years old. He played in family pickup games as he learned English and adjusted to his adopted culture. It was in 2009 that he first noticed a cough—at home, at school and playing soccer. It wouldn’t quit. When he saw his pediatrician—as a 17-year-old, he wasn’t yet an adult—Oviedo was prescribed antibiotics for a suspected bacterial infection. But the cough persisted. A subsequent chest X-ray revealed something suspicious in his left lung, and he was referred to a pulmonologist at Montefiore Medical Center/Albert Einstein School of Medicine in the Bronx. That fall and winter, Oviedo’s excitement at starting college at Saint Peter’s University, a Jesuit school in Jersey City, New Jersey, was dimmed only by the many tests he underwent as doctors tried to pin down a diagnosis. “At first, they thought it was tuberculosis because I came from a different country, even though that was years back,” he says. It wasn’t. Further tests also ruled out cystic fibrosis. Oviedo had no family history of cancer and had never smoked, but in May 2010, a biopsy of his left lung revealed the diagnosis: non-small-cell lung cancer (NSCLC), the most common type of lung cancer—specifically, adenocarcinoma. “I remember the day,” he recalls. “My dad and mom were there, and we were waiting for the results, nervous.” But when the doctor told them it was cancer, “Somehow, I felt this peace.” A year earlier, Oviedo had been born again as a Christian. Now, his faith in Christ gave him the strength to confront cancer without succumbing to fear, depression or sadness.
one. It lasted seven months and shrank the tumors a little. Given Oviedo’s age, a double lung transplant seemed a viable way to extend his young life. But when a biopsy of his right lung revealed no cancer, the transplant was off the table. Instead, surgery to remove his left lung was scheduled at Memorial Sloan Kettering Cancer Center (MSK) in Manhattan. It was Valentine’s Day 2012. “I told the surgeon, ‘Please don’t break my heart,’ because literally you have to touch the heart to remove the lung. It was definitely a walk of faith,” Oviedo says. “I remember when they were preparing me for the operation, I’m not even thinking, What if something goes wrong? I’m just thinking, OK, God, I’m just going to go to sleep, and then I wake up. I was very childlike in my faith.” Recovery was very painful for the first few days. “It was like an elephant pressing down on my lung, and I had to squish this pillow they gave me and cough, cough, cough so blood and fluids would come out,” Oviedo says. He required a transfusion because of blood loss. But he was discharged after a week; within two weeks, he was bike riding with his cousin. “I remember thinking, Wait, how did I do that?” he says. Three months later, though, a follow-up CT scan brought bad news: a suspicious growth in his right lung. “I was like, Oh, no, not again,” Oviedo says. A needle biopsy confirmed that it was cancer.
CHEMO AND SURGERY Oviedo started treatment in the adult oncology department at Montefiore. “I was the youngest patient there,” he says. The plan was to shrink the cancer with chemotherapy and then surgically remove the Giancarlo Oviedo remaining cells. The first chemo wants young people with cancer to know regimen caused internal bleeding, about clinical trials. so he was switched to a different
CLINICAL TRIALS It was time for a new strategy. His Montefiore oncologist recommended clinical trials. This opportunity is not universally offered to people with cancer who might benefit. While clinical trials provide early access to promising cancer therapies, participation is low among Latino and Black people (see “Opening Up Clinical Trials,” page 19). The high price of treatment and
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lack of health insurance can be growth, but “the side effects were barriers; fortunately, Oviedo’s inthe worst,” he says. “I could taste surance has covered his treatment the medicine in my mouth. Every costs. time I coughed—and I cough freIt was early days in targeted quently—I would smell it again. I therapy, a form of precision medijust couldn’t eat, and I felt like a cine that matches a drug to a spezombie. I would have to force mycific genetic mutation in someone’s self to get out, to study and just do advanced-stage cancer. Neverthemy daily things.” His father interless, biomarker testing revealed a vened, and Oviedo quit the trial. known mutation that made Oviedo Finally, in 2016, Oviedo started eligible for a clinical trial. “This on another targeted therapy, a clinical trial stabilized me,” he says. Giancarlo Oviedo and Amanda Mutio daily medication for those with “I remember I felt nauseous and getting married in North Carolina, 2020 NSCLC who have a ROS1 gene stuff, but it did extend my life for mutation. The side effects have one more year.” been minimal, and it has kept his cancer in check. Oviedo had left Saint Peter’s University and enrolled in Such positive outcomes are increasingly common in Lehman College in the Bronx, nearer to home. “I was going lung cancer treatment. Between the 2009 to 2013 and the to college, and the days I had the pills, I would just try to 2014 to 2018 periods, the annualized lung cancer death rest. I didn’t know much then about accommodations for rate fell by half, from 5.0% to 2.4%. New therapies, indisabilities because I thought that was more for people in creased screening and smoking cessation (not a factor in wheelchairs.” Later, his professors did offer accommoda- Oviedo’s case) have all contributed to the decrease. tions, such as extensions on tests. After a year, his cancer With his health stabilized, Oviedo was able to comstarted regrowing, so he left the trial. plete his college degree in Spanish literature in 2017— More trials ensued. A 2014 MSK clinical trial for an four years later than if NSCLC had not disrupted his life. immunotherapy treatment had no effect on his cancer, so he went off it after six months. In 2015, he started on SURVIVING THE PANDEMIC another clinical trial, testing a treatment that targets a In March 2020, when the coronavirus was beginning different genetic mutation. to spread across the country, Oviedo traveled to North Going on the drug might have paused the cancer’s Carolina with his girlfriend, Amanda Mutio, to visit her
Despite the prevalence of poverty and discrimination, Latinos have a longer life expectancy than Blacks or non-Latino whites. This is sometimes referred to as the Latino (or Hispanic) paradox and is reflected in cancer too. According to a 2021 report in The Oncologist, although Latinos are diagnosed with more advanced cancer than Blacks and non-Latino whites and have the lowest health insurance coverage rates of any racial or
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ethnic group, “they experience a survival benefi t,” says Albert Einstein College of Medicine epidemiologist H. Dean Hosgood, PhD, who is studying lung cancer in the Bronx. Strong roots in countries of origin may play a role. “We know culturally that immigrant populations, whether they’re first or second generation, tend to have stronger family connections or stronger community connections, and maybe that has
implications for how they’re responding to their treatment,” says Hosgood. Lifestyle factors, such as diet and exercise; behavioral exposures, such as via smoking; and genetics may also play a part. Perhaps it’s a combination of diet, exercise, family and faith that has bolstered Oviedo’s resilience. But he also has had access to something some of his Latino peers do not—the latest cancer therapies.
COURTESY OF GIANCARLO OVIEDO
THE LATINO SURVIVAL BENEFIT
parents. Right after they arrived, he experienced a fever, loss of taste and smell and difficulty breathing. He tested positive for COVID-19, which is more likely to lead to serious disease and death in people with lung cancer. His oncologist was particularly worried that he might pick up another infection if he went to the ER, so she advised Oviedo to stay where he was unless he “really, really couldn’t breathe,” he recalls. Amanda and his church family started praying for him, and he prayed too. After two weeks, he got better—the fever abated, he could breathe again and, after a month, his senses of smell and taste returned. “Honestly, that was a miracle because with one lung and lung cancer, it was dangerous,” he says. Oviedo was struck by Amanda’s devotion to him. “I saw her true character when I was at my weakest, praying for me and reaching out to get people to pray for me. I was like, Wow, how can I not marry this woman?” When he was well again, they visited a beautiful botanical garden, and he proposed. After a brief engagement, the couple had a wedding in North Carolina, surrounded by family. That fall, Oviedo returned to New York City for a followup CT scan that showed a “significant increase” in his cancer. He had to find a way to break the news to his young wife. “She got sad,” he says, “but thank God for our faith, because it was difficult for her.” He had weekly radiation treatments for a month and remained on the ROS1 targeted therapy, “just in case.” So far, there have been no other signs of tumor growth. Currently, Oviedo works part-time for a Christian organization called Bridges International, which holds events and builds community for international college students. He also works for a pediatric cancer nonprofit, doing family outreach to the Spanish-speaking community and helping with registration for summer camp and in-hospital programs for kids. Explains Oviedo, who hopes to start a family soon, “I have a heart for kids.” STAYING STRONG “I used to love eating McDonald’s and other fast food, lots of fried food and sugar,” Oviedo says. But when he had side effects during the 2015 clinical trial, he started researching alternative diets. “In a lot of the research, the common denominator was a plant-based diet.” He revamped his eating habits. “It really helped,” he says. “I [got] some energy back, and I felt better.” Now his diet consists of plenty of vegetables, salads, legumes and oc-
OPENING UP CLINICAL TRIALS Giancarlo Oviedo has been fortunate to be able to participate in clinical trials, and he is lending his voice to a public service campaign to encourage others to seek them out. “Despite a high prevalence of certain cancers in racial and ethnic minority populations,” says Jeanne M. Regnante, chief health equity and diversity officer at the nonprofit LUNGevity Foundation, “fewer than 10% of these deserving patients with cancer engage in clinical research.” Her organization, along with the nonprofit Stand Up To Cancer, the digital medical education company PlatformQ and the Moffitt Cancer Center in Tampa, hope to change that. To that end, in September 2021, they launched a yearlong program that aims to educate and empower underserved racial and ethnic minority and rural communities to consider clinical trial participation. In a video interview to promote the interactive program on social media, Oviedo describes his experiences with clinical trials. “I know there’s people out there, even my age, that are probably going through similar things,” he says. “I want to remind them that there are people that have gone down a similar path, and there are options— like clinical trials.” To learn more about the program, go to cancerhealth.com/cancercoachlive.
casionally chicken and excludes meat, soda, sugar and fast food. He drinks green tea, lots of water and, in the morning, orange juice. He also walks a lot, bicycles and still plays pickup soccer games with his family every couple of months. What keeps him going? “I think a combination of church, family and just being active,” he says. “Church is definitely my safe haven. Just being in a prayer meeting is really helpful for me. Family gatherings help me stay motivated. And then just being active when I was in college. Also, my service to kids brings a sense of purpose and a sense of strength.” “It’s always been a new thing happening every year,” says Oviedo. “It’s hard to plan sometimes. But I think I also don’t want to fail to plan because I always want to have something to turn my eyes to.” ■
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A new generation of precision cancer therapies are easier to tolerate than traditional treatment. BY LIZ HIGHLEYMAN
TRADITIONALLY, CANCER TREATMENT HAS RELIED ON
surgery, radiation and chemotherapy—or “slash, burn and poison.” While chemotherapy is often effective, it’s not very discriminating. Cytotoxic chemo drugs kill fast-growing healthy cells as well as malignant ones, which can lead to a wide range of side effects. Until the late 1990s, most people with cancer could expect to receive chemotherapy as their first, and sometimes only, treatment option. But things are changing, and a growing number of patients are eligible for newer, better-tolerated therapies. 20 CancerHealth WINTER 2022 cancerhealth.com
(JACKMAN) COURTESY OF DANA-FARBER CANCER INSTITUTE; (LIE) COURTESY OF DAMON RUNYON CANCER RESEARCH FOUNDATION
The side effects of chemotherapy—including nausea, low blood cell counts, hair loss and painful peripheral neuropathy—are well known. In fact, some cancer patients dread them so much they’re reluctant to start treatment. “I often tell people it was the chemo that nearly killed me and not the cancer,” says breast cancer survivor MeganClaire Chase. “I experienced multiple side effects that were so severe that my quality of life has been deeply impacted. I have chemo-induced peripheral neuropathy in my hands and feet. Now, I sometimes walk with a cane. As someone who used to dance and walk gracefully, this has really impacted my self-confidence. I beat cancer, yet I’m reminded of the chemo trauma every day.” Over the past two decades, targeted therapy and immunotherapy have ushered in a new era of precision medicine for cancer. These treatments home in on tumors, often with less collateral damage to normal cells. “New advanced cancer treatments are able to more specifically treat cancer while sparing normal healthy cells, which can result in fewer side effects,” says Yung Lie, PhD, president and CEO of the Damon Runyon Cancer Research Foundation. “These side effects, when severe, can result in patients discontinuing their treatment prematurely, allowing cancer cells to resume their growth.” Gentler treatment is a particular priority for older people, who may have more difficulty tolerating aggressive chemotherapy. “We know from prior research that older adults generally value other factors, such as quality of life and maintenance of physical function, over survival,” says Daneng Li, MD, of the City of Hope cancer center, who is studying personalized supportive care for older patients. The need for better-tolerated treatment is also a big concern for people living with cancer long term. “For those of us living with metastatic breast cancer, our treatment never ends until we die. It’s a marathon, not a sprint,” says patient advocate Kelly Shanahan, MD. “We need—and deserve—not only effective treatments but treatments with fewer side effects. It’s one thing to tolerate nausea for four rounds of early-stage chemo and quite another to be expected to tolerate it for months upon months or even years. Quantity of life without quality is no life.” In addition to tolerability, some newer drugs are more convenient and less disruptive to daily life. Many targeted therapies are pills, while chemotherapy usually requires IV infusion. “One of the advantages of oral meds is freedom—not being tied to a chemo chair
every week or every three weeks,” Shanahan adds. NEW APPROACHES Over the years, a better understanding of how cancer develops and spreads has led to refinements in treatment. Novel minimally invasive techniques allow surgeons to remove tumors using smaller incisions, which reduces damage to surrounding tissue and speeds recovery time. Radiation therapy has improved too, with new methods that pinpoint tumors. And for some patients, a waitand-watch approach that defers therapy in favor of active surveillance may in some cases allow them to avoid aggressive treatment altogether. But the biggest changes in treatment involve systemic therapies, that is, medications that affect the whole body. Based on a growing understanding of the molecular biology of cancer and how the immune system responds—or fails to respond—scientists have developed new treatments that block proteins involved in cancer cell proliferation and metastasis or spur immune cells to fight cancer. “An understanding of the genetic changes underlying specific cancers has led to the development of targeted therapies designed to attack cancer cells that contain alterations in certain genes,” Lie explains. “Other cancers respond to immunotherapy, which unleashes the body’s own immune system to attack the cancer cells.” Novel therapies have changed the paradigm for two of the most common malignancies: breast cancer and lung cancer. One of the earliest targeted therapies, trastuzumab (Herceptin), approved in 1998, targets the HER2 receptor, which is highly expressed in about 20% of breast tumors. Today, there are over 100 approved targeted
David Jackman, MD, of the Dana-Farber Cancer Institute (left), and Yung Lie, PhD, of the Damon Runyon Cancer Research Foundation
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therapies for numerous types of cancer. For people with non-small-cell lung cancer (NSCLC), there are now approved targeted drugs for eight so-called driver mutations that trigger uncontrolled cell growth (ALK, BRAF, EGFR, KRAS, MET, NTRK, RET and ROS1). A recent study found that 50% of tumor samples from smokers and 78% to 92% of samples from never smokers had potentially treatable mutations. The advent of these medications, along with immunotherapy, has contributed to the notable decline in lung cancer mortality in recent years. (See “Finding Grace in Adversity,” page 16.) Even for patients who still receive chemotherapy, there’s a trend toward shorter treatment duration, fewer drugs and more personalized risk assessment, rather than deploying the big guns right away for all patients. The TAILORx trial, for example, found that a majority of women with early breast cancer could safely skip chemotherapy based on a low risk score for disease progression. Antibody-drug conjugates combine the best of both worlds, using targeted monoclonal antibodies to deliver potent chemotherapy drugs directly to tumors. What’s more, efforts are underway to make chemotherapy easier to tolerate. Former Damon Runyon clinical investigator Peter Cole, MD, of Rutgers Cancer Institute of New Jersey, is working on ways to prevent chemo brain, or impaired cognition, in children with leukemia. Damon Runyon fellow Elise Jeffery, PhD, of the University of Texas Southwestern Medical Center, is investigating ways to repair bone marrow damage due to chemotherapy or radiation, while fellow Chuchu Zhang, PhD, of Harvard Medical School, is exploring the biological mechanisms underlying chemo-induced nausea.
I often tell people it was the chemo that nearly killed me and not the cancer. I experienced multiple side effects that were so severe that my quality of life has been deeply impacted. I beat cancer, yet I’m reminded of the chemo trauma every day.
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While each specific mutation may occur only in a small proportion of people, as more drivers and corresponding drugs are discovered, the better the odds that a patient will have at least one of them. Checkpoint inhibitor immunotherapy, likewise, does not work for everyone or for all kinds of cancer. Across cancer types, fewer than half of patients respond, and it is not easy to know in advance who will benefit. These therapies work best for so-called hot, or inflamed, tumors that have many mutations and attract T cells (for example, NSCLC and melanoma), but they aren’t very effective against cold tumors that lack these immune cells (for example, ovarian cancer and prostate cancer). Faster and less expensive genetic testing has been key to the wider use of these newer therapies, enabling doctors to design customized regimens for each patient. This includes both genomic testing of tumors and genetic testing for inherited (germline) mutations, such as BRCA. In the past, oncologists tested for recognized genetic alterations one at a time, but next-generation sequencing makes it possible to search for multiple mutations in a single tumor sample or blood sample, known as a liquid biopsy. Other tests look for biomarkers (such as PD-L1), tumor mutation burden and deficient DNA repair mechanisms, all of which predict response to checkpoint inhibitors. The use of genomic testing is expanding, and a growing number of insurers cover it, but it’s still mainly done for people with recurrent or metastatic cancer. “Without next-generation sequencing, patients with advanced cancer are doomed to take old-style chemotherapy,” says retired oncologist, breast cancer survivor and
BOTH IMAGES: COURTESY OF INDIVIDUALS
LIMITATIONS AND BARRIERS Despite their promise, novel therapies have their limitations, and they’re not for everyone—at least not yet. Many people do not have tumor mutations that would make them eligible for targeted therapies. Some of the genetic alterations targeted by available drugs are rare. For example, only around 1% to 2% of NSCLC patients have ROS1 driver mutations. But the Food and Drug Administration recently approved the first drug targeting KRAS, which plays a role in around a third of all cancers.
—Megan-Claire Chase (Warrior Megsie)
patient advocate Elaine Schattner, MD. “If you’ve got terminal cancer and want treatment, your doctor has a responsibility to look for changes in your tumor that could inform treatment, and insurers have an obligation to pay for these diagnostic tests.” But universal testing of everyone with early-stage cancer remains controversial. Vinay Prasad, MD, MPH, of the University of California at San Francisco, cautions that widespread testing could lead doctors to prescribe drugs that target specific mutations but have not yet been shown to provide clinical benefits, such as improved survival. What’s more, newer treatments come with their own side effects. Some targeted therapies block proteins that play a role in the growth of normal cells as well as malignant ones. Checkpoint inhibitors can lead to excessive inflammation that can harm organs throughout the body. And these treatments are often taken for longer periods than chemo. “Everyone thinks that traditional IV cytotoxic chemotherapy is the worst when it comes to side effects, but that’s not necessarily true,” says Shanahan. “Oral targeted therapies can be just as debilitating and in some cases perhaps even worse.” CHANGE TAKES TIME For many patients, chemotherapy remains the mainstay of treatment. Because chemo drugs work pretty much the same in everyone, they require less expertise. As new driver mutations, targeted drugs and biomarkers are continually being discovered, it can be difficult for nonspecialists to keep
For those of us living with metastatic breast cancer, our treatment never ends until we die. It’s a marathon, not a sprint. We need—and deserve—not only effective treatments but treatments with fewer side effects. —Kelly Shanahan, MD
up. And some oncologists are hesitant to try newer therapies for which they have less evidence from randomized clinical trials and less experience with real-world use. “Though today, an individual patient may see their treatment simply—‘My doctor found an EGFR mutation in my lung cancer, and this targeted therapy is shrinking my cancer dramatically’—the reality is that it took a decade to determine the efficacy and toxicity of EGFR inhibitors, find the appropriate dose, discover the tumor gene mutations that predict sensitivity and ultimately determine that they were better than chemotherapy as an initial treatment for appropriate patients,” says David Jackman, MD, of the Dana-Farber Cancer Institute. In addition, newer medications are more expensive than older chemotherapy drugs (many of which have generic versions), and insurers may be reluctant to cover them. In practice, access to cutting-edge therapies may depend on where someone is treated, contributing to disparities for Black and Latino, low-income and rural patients. Chemotherapy and newer therapies are hardly mutually exclusive, and they are often used together. In fact, chemo and radiation have gotten a new lease on life as immunotherapy boosters. As these old standbys kill cancer, the dying cells release antigens that can spur immune cells into action, turning cold tumors hot. Despite the barriers, the shift to more personalized treatment beyond chemotherapy is underway—but, like all things in evidence-based medicine, big changes take time. “Our goal is for accessible treatments that provide longer lives with fewer symptoms for our cancer patients,” says Jackman. “And for many patients, chemotherapy still plays an important role in helping them live longer and feel better. That said, we are continually searching for newer and better ways to help our patients. With any new therapy, it takes time to develop these treatments, assess their safety and understand when and how they are best used.” As paradigms change, it’s important to work with your health care team to explore different treatments. Ask if genomic testing and clinical trials might be right for you. Learn about all the available options—not just the most widely used—and don’t be afraid to seek a second opinion. “The ultimate goal,” says Lie, “is to be able to implement personalized medicine: a customized treatment regimen for each individual patient based on a thorough genetic analysis of their cancer, such that each patient is given the exact treatments they are most likely to respond to.” ■
cancerhealth.com
WINTER 2022
CancerHealth 23
RESOURCES
BY TRENT STRAUBE
Financial Assistance
AS IF CANCER WEREN’T ENOUGH, MONEY MATTERS ARE OFTEN A CHALLENGE. Luckily, you don’t have to navigate this situation alone. These organizations can help.
cancer.net/navigating-cancer-care/ financial-considerations
The Financial Resources section of this patient portal, run by the American Society of Clinical Oncology, is a fantastic place to start your research (though don’t skip the other sections on the Financial Considerations page). You’ll find a roundup of national and local financial service organizations as well as groups that provide assistance for housing (Hope Lodge), travel (Air Care Alliance, Mercy Medical Angels), medical costs (Assist Fund, Good Days) and more. Cancer Financial Assistance Coalition cancerfac.org
Organized by a coalition of 14 major cancer groups, this database acts as a clearinghouse for your financial needs. Type in your diagnosis (breast cancer, for example), your ZIP code and the type of aid you’re looking for (such as help with copays or wigs) and a list of relevant organizations is at your fingertips. CancerCare cancercare.org/financial_assistance
Along with limited financial aid, CancerCare offers emotional and practical help, such as free professional counseling and support groups. Its publications
can be downloaded or mailed to you free of charge; of note are “Coping With Cancer When You’re Uninsured ” and “A Helping Hand: The 2021 Resource Guide for People With Cancer.” Cancer Finances
patients with specific chronic and life-altering diseases can apply for grants. Funding is organized according to illness, including many types of cancer; check out the list to see whether your cancer is currently covered and whether you qualify.
cancerfinances.org
Created by two nonprofits, Triage Cancer and The Samfund (see both below), this educational tool kit helps you better understand the impact cancer can have on your finances. The digital database of easy-tounderstand information is organized into topics such as clinical trials, employment issues and paying for long-term care. You can further tailor each subject to your specific needs. It’s like taking a class on finances. Family Reach familyreach.org/family-eligibility
This group provides financial resources and support through grants, education, resource navigation and guidebooks. Fill out an online application and it will match its services with your needs. Healthwell Foundation healthwellfoundation.org
Even if you have insurance, your out-of-pocket expenses for cancer care can be overwhelming. At Healthwell, underinsured
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PhRMA’s Medicine Assistance Tool (MAT) medicineassistancetool.org
NeedyMeds needymeds.org
Search these two databases to find out whether pharmaceutical companies offer patient financial assistance programs for your medications. The Samfund thesamfund.org
The fund helps young adult cancer survivors escape medical debt by offering direct financial assistance as well as online support, webinars and education. Triage Cancer triagecancer.org
Although it doesn’t offer direct financial aid, Triage Cancer provides advice on understanding and managing your bills so you don’t overpay and get stuck with unauthorized charges. You can also learn how to appeal denials of coverage and navigate legal issues, such as disability insurance (see Solutions, page 32). Discover more resources: cancerhealth.com/resources
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LIFE WITH CANCER
BY DOREEN ZETTERLUND
Shakespeare, Meet Leukemia I WOULD RATHER BE READING Shakespeare than familiarizing myself with new treatments for chronic lymphocytic leukemia (CLL). But as the Bard wrote in his sonnet “Venus and Adonis”: “Make use of time, let not advantage slip.” It was 2015, and I was feeling tired and stretched thin. I chalked it up to living the dream of a sometime working actor in Los Angeles. I was burning the candle at both ends, auditioning, working as production crew on low-budget and student films, supporting my fellow thespians and writer friends on their projects and holding down the obligatory day job. Eventually, though, no amount of turning down projects restored my energy. Something was wrong. I had a lump on my neck that I thought was a muscle spasm. Imaging showed an enlarged lymph node; more imaging showed enlarged lymph nodes throughout my body. Blood work and a biopsy led to a diagnosis of small lymphocytic lymphoma (SLL). My first oncologist was vague and handed me a pamphlet as he hustled me out the door telling me to go live my life, that we were not going to treat this incurable cancer now and it was a “good cancer.”
“Well, everyone can master a grief but he that has it.” —Much Ado About Nothing I was floundering, in shock. Dr. Google told me my life expectancy was five years. I did not want to alarm family out of state, so I kept what I was learning to myself. Good thing, since very little of what I researched on my own was accurate. “I say there is no darkness but ignorance.” —Twelfth Night I reached out to the Leukemia & Lymphoma Society, and they put me in touch with someone who also had this diagnosis. I found out that SLL and CLL are essentially the same disease, with the same treatments. They directed me toward the CLL Society, an education and support network for patients and caregivers. This is where my education really started. “Study is like the heaven’s glorious sun.” —Love’s Labour’s Lost I talked with people who had been diagnosed and survived for 20-plus years. Many had their lives saved by cutting-edge medications through clinical trials. I came to learn that traditional chemotherapy was used less and less, as the new oral medications were proving very
26 CancerHealth WINTER 2022 cancerhealth.com
Doreen effective, with Zetterlund manageable turned her love side effects. I of learning learned that toward saving her own life. I may have a normal life span, with periodic treatment of the disease and, possibly, long remissions in between. After a watch-and-wait period that lasted 22 months, I was the last person accepted into the clinical trial of my choice, with the drug of my choice, at the institution of my choice, with the oncologist of my choice. The stars aligned for me. Supported by my proactive self-education, I immersed myself in the science and medicine of this disease and faced it head-on. I would have much rather been producing and performing in a play, but you do what you have to do and live to play another day. I am five years into treatment and enjoying a partial remission with minimal side effects. You could say that all’s well that ends well, but I’d rather quote King Lear: “Thy life’s a miracle.” ■ For more first-person essays: cancerhealth.com/stories
COURTESY OF DOREEN ZETTERLUND/THOMAS MIKUSZ
Doreen Zetterlund, 60, lives in Southern California. She has chronic lymphocytic leukemia.
A pancreatic cancer diagnosis can bring about many emotions. Hope is finally one of them.
Stand Up To Cancer Ambassadors TIFFANY HADDISH & MARLON WAYANS
Photos By Koury Angelo & Matt Winkelmeyer
When you or someone you love is facing a pancreatic cancer diagnosis, access to cutting-edge treatments can help make long-term survival possible and improve future patient outcomes. That’s why Stand Up To Cancer and the Lustgarten Foundation have teamed up to bring over 30 pancreatic cancer clinical trials to those who need them. For more information about the latest pancreatic cancer research and clinical trials near you, visit PancreaticCancerCollective.org.
Stand Up To Cancer is a division of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization.
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GOOD STUFF
BY KATE FERGUSON
SURVIVE AND THRIVE Products to help support your health and well-being
Le Wren’s Cancer Care Gift Box ($98) is a collection of products selected to relieve common cancer treatment side effects. It includes an unscented therapy wrap, unscented body butter, an anti-nausea roller and a box of rose tea. Launched by two women whose mothers had cancer, the site features practical, nonclinical products made by artisans.
After her diagnosis with skin cancer at age 26, magazine executive Melissa Papcock teamed with a colleague to launch Cabana Life, a line of stylish casual clothing and accessories ($10 to $130) for the whole family. Its fabrics offer 50+ UV protection, which the Skin Cancer Foundation rates as excellent. Cabana Life partners with various organizations to raise awareness and funds for skin cancer prevention and research.
Because chemotherapy can sometimes cause mouth sores, a manual toothbrush may be gentler on sensitive areas. Doctor Plotka’s Mouthwatchers toothbrushes (one adult- or youth-sized brush, $4.99; travel-sized, pictured, $5.99; bundles, $6.99 to $24.94) were designed to gently clean between the teeth and under the gumline, where oral problems can begin. Bristles are infused with silver, a patented antibacterial agent.
A survivor of adolescent cancer, M. Patricia Diaz chronicles her journey to remission in the awardwinning book Pretty Girls Don’t Get Cancer (available on Amazon.com, Kindle, $9.99; paperback, $19.50). The title is a statement made by a doctor she visited when she began having symptoms. Her tale explores the impact illnesses have on our relationships with family, friends and ourselves as well as how healing physically is just the first step toward authentic wellness.
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Cold can help lessen pain by partly numbing the affected area. Check to see whether your cancer care team will OK use of the nonmedical treatment Recoup Cryosphere Ice Cold Massage Roller ($49.99). If so, pop the baseball-sized stainless steel ball in the freezer for two hours and get up to six hours of icy massage to relieve muscle spasms, stiffness or joint pain.
Some cancer treatments may limit your ability or desire to have sex, at least temporarily. That can make dating tough for both men and women (think erectile dysfunction and vaginal dryness). Breast cancer survivor Anna Leonarda developed the free app Entwine Dating to help people of all sexual orientations who—due to medical or personal reasons—don’t prioritize intercourse in building their relationships meet others like them.
Find more products to make life easier: cancerhealth.com/good-stuff
Why We Strive LUNG FORCE is a national movement led by the American Lung Association to defeat lung cancer in women.
Lung cancer is the #1 cancer killer in the U.S., but only 27% of Americans know that this is the case.
We must unite the country to stand together against lung cancer.
1 in 16 17%
people will develop lung cancer in their lifetime
of lung cancer cases are diagnosed early, when the disease is most treatable
LUNG CANCER KILLS 422 PEOPLE EVERY DAY
16
1 DEATH EVERY 3.7 MINUTES
DEATHS EACH HOUR
Each year, about 24,000 people who never smoked are diagnosed with lung cancer
The five-year survival rate for lung cancer is
23%
, among the lowest for all types of cancers
But now there’s hope–over the past five years, the lung cancer survival rate has increased by a dramatic 13% to 23%
Every 2 and a half minutes, someone in the U.S. is told they have lung cancer
Anyone can get cancer, and no one deserves it
2/3
of lung cancer diagnoses are in never smokers and former smokers although the majority of these are former smokers
Together we can reverse this trend and make lung cancer history once and for all. For more information visit
LUNGFORCE.org
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YOUR TEAM
BY ABBY SAJID
Spiritual Support
Rabbi Mackenzie Zev Reynolds is a palliative care chaplain at Mount Sinai in New York City.
How do you work as a team? Your oncology team might call in the palliative care team for additional support for pain and other symptoms. The team generally includes physicians, nurses, social workers and chaplains. You can find us in inpatient cancer settings and, increasingly, in outpatient settings. How do you support people with cancer? Cancer affects a person’s sense of self extremely deeply. We give space for people to find, name and express whatever is going on for them emotionally. I work with people to explore what matters most, what’s been lost, what’s hoped for and feared and what sustains them. When should someone with cancer seek out a chaplain? At any point that you have things you want to explore. You might be experiencing a lot more anxiety than normal. It might be
during a transition, such as diagnosis, going into remission, having a relapse or facing a change in treatment. Do you ever refer a patient to a mental health professional? We work in tandem with social workers, psychologists and psychiatrists. In cases where the support needed goes beyond our clinical training and capacity, we refer to one of these [mental health professionals], usually in collaboration with our palliative care teams. Do you work with people of differing faiths and beliefs? I work with everybody. I see the work that I do as being both existential and spiritual. Some people are not religious or spiritual at all, and some people are religious in practice but maybe not particularly theistic. The work is around what matters most. What are the positive sources of support and strength? What do people hope and fear? Are there any regular practices people use that nurture and sustain them? For people who are religious or spiritual, I might incorporate prayer, meditation or spiritual reflection into the sessions. You may want to engage in traditionspecific practices or prayers that you need some support with. I can facilitate those or find the
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appropriate You don’t need to be religious to person who can benefit from do so. For peochaplaincy, says ple who are not Rabbi Mackenzie Zev Reynolds. religious or spiritual, I offer space for reflection and expression. I’m led by what’s helpful for a person. There may be creative practices, mindfulness exercises, music or dancing. How can someone find a palliative care chaplain? Start with your provider. You might also check with the chaplaincy office of any hospital to which you are admitted. Spiritual care services are part of inpatient care—patients are not billed for these conversations. When chaplaincy is available [on an] outpatient [basis], it is also similarly not billed. What inspires you? Being able to collaborate with my team members to support our patients as holistically as possible. We make sure that all aspects of a person’s self are really present in the minds of the treatment team. ■ Who’s on your team? cancerhealth.com/team
COURTESY OF RABBI MACKENZIE ZEV REYNOLDS
Can you describe your role? I am a member of a palliative care team who has clinical training in providing spiritual care and emotional support to patients, family and friends. Many of us are ordained, but not all. We work multireligiously, including with secular and nonreligious people, to provide wide-ranging support.
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
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BY JOANNA FAWZY MORALES, ESQ.
Get Paid When You Can’t Work
When cancer prevents you from earning a living as you once did, disability insurance and government aid can replace lost wages. EVEN IF YOU ARE ELIGIBLE FOR UNPAID MEDICAL LEAVE FROM WORK, such as that provided for under the Family and Medical Leave Act, you may not be able to afford it. You need income. You might start by using your sick time and vacation time; some companies may even allow coworkers to donate their leave hours to you. Disability insurance is another option. Find out whether your employer provides private disability insurance. Indeed, you may already have it: Many people forget that they signed up for the coverage when they started their job. If you have it, consider applying. You can also apply for federal and, if available, short-term state disability programs. If you’re eligible, you may receive these benefits even if you’re also getting private disability benefits. The Social Security Administration (SSA) administers two federal long-term disability programs—Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). SSA requires that your disability has lasted, or is expected to last, for at least one year or to result in death and that it renders you unable to do your current job or to adjust to a new one. With SSDI, you qualify for benefits if you are “insured,” meaning that you have worked long enough recently, and have paid Social Security taxes. The maximum monthly benefit from SSDI for someone who is not blind is $3,245 per month in 2021. There is a full five-month waiting period. With SSI, you qualify for benefits if you have a low income and few assets and are age 65 or over or if you have a disability. The 2021 federal amount for most people receiving SSI is $841 per month. Most states add a supplemental payment. You become eligible for benefits the first full month after your disability began. It’s possible to receive both SSDI and SSI at the same time. It is common for the SSA disability benefits application process to take a long time. One way to speed it up is to see whether you qualify for the Compassionate Allowances program (www.ssa.gov/compassionateallowances). If your cancer diagnosis is on the list—about 60 are—be sure to include that in your application. ■ Joanna Fawzy Morales, Esq., is CEO of the nonprofit Triage Cancer (triagecancer.org), which provides free education on the practical and legal issues that arise after a cancer diagnosis.
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Appealing SSA Disability Denials Most applications for SSA disability benefits are initially denied. It’s important to appeal. Work with your health care team to provide information about your medical condition during the appeals process, which may involve the following steps: 1. Request for Reconsideration A review of your claim by someone who did not take part in the first decision. Some states skip this step. 2. Administrative Law Judge Hearing An in-person or online hearing during which a judge will ask about your medical condition and ability to work. It can be helpful—but not required—to have an attorney at this stage. Attorneys’ fees are limited by law. 3. Review by Appeals Council 4. Federal Court Review If the Appeals Council decides not to review your case or rules against you, you may file a lawsuit in federal district court.
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SOLUTIONS
SURVEY
How much has cancer or its treatment interfered with your personal relationships? ❑ A lot ❑ Somewhat ❑ Not at all How much has cancer or its treatment interfered with your work? ❑ A lot ❑ Somewhat ❑ Not at all
QUALITY OF LIFE Side effects from cancer or its treatment can diminish one’s quality of life. Please take our survey and let Cancer Health know which issues are affecting your everyday activities and general well-being. What type(s) of cancer do you have? (Check all that apply.) ❑ Bladder ❑ Kidney ❑ Lymphoma ❑ Breast ❑ Leukemia ❑ Melanoma ❑ Colorectal ❑ Lung ❑ Prostate ❑ Other (Please specify.): __________________ Are you currently receiving cancer treatment? ❑ Yes ❑ No On a scale of 1 to 5, rate how often you experience the following conditions. (1 = not at all, 5 = very often) Anxiety ❑1 ❑2 ❑3 ❑4 ❑5 Brain fog ❑1 ❑2 ❑3 ❑4 ❑5 Constipation ❑1 ❑2 ❑3 ❑4 ❑5 Depression ❑1 ❑2 ❑3 ❑4 ❑5 Fatigue ❑1 ❑2 ❑3 ❑4 ❑5 Mobility issues ❑1 ❑2 ❑3 ❑4 ❑5 Nausea ❑1 ❑2 ❑3 ❑4 ❑5 Pain ❑1 ❑2 ❑3 ❑4 ❑5 Trouble sleeping ❑ 1 ❑ 2 ❑ 3 ❑ 4 ❑ 5
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Have you experienced any change in your appearance because of cancer or its treatment? ❑ Yes ❑ No Do you feel isolated as a result of cancer or its treatment? ❑ Yes ❑ No
How much has cancer or its treatment interfered with your sex life? ❑ A lot ❑ Somewhat ❑ Not at all How much do you worry about the financial burden of cancer or its treatment? ❑ A lot ❑ Somewhat ❑ Not at all Has cancer or its treatment ever prevented you from doing what you want to do? ❑ Yes ❑ No Have you made any positive changes in your life as a result of your cancer diagnosis? ❑ Yes ❑ No Do you consider quality of life issues when making treatment decisions? ❑ Yes ❑ No What year were you born? _ _ _ _ What is your gender? ❑ Male ❑ Transgender ❑ Female ❑ Other 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
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