Cancer Health Winter 2022

GRACE IN ADVERSITY

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

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

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.

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.

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

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.

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

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

Summary of Important Information About Jaka ®

Please read this summary carefully and then talk with your healthcare provider about Jaka (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 bene ts of a prescription drug.

What is Jaka ?

Jaka is a prescription medicine used to treat:

• adults with certain types of myelo brosis (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 Jaka is safe or effective in children for treatment of myelo brosis or polycythemia vera.

Before taking Jaka , tell your healthcare provider about all of your medical conditions, including if you:

• have an infection

• have or have had low white or red blood cell counts

• have or had tuberculosis (TB), or have been in close contact with someone who has TB

• have had shingles (herpes zoster)

• have or had hepatitis B

• have or have had liver problems

• have or have had kidney problems or are on dialysis. If you are on dialysis, Jaka should be taken after your dialysis

• have a high level of fat in your blood (high blood cholesterol or triglycerides)

• have had cancer in the past

• are a current or past smoker

• have had a blood clot, heart attack, other heart problems or stroke

• are pregnant or plan to become pregnant. It is not known if Jaka will harm your unborn baby

• are breastfeeding or plan to breastfeed. It is not known if Jaka passes into your breast milk. Do not breastfeed during treatment with Jaka and for 2 weeks after the nal dose

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. Taking Jaka with certain other medicines may affect how Jaka works. Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist when you get a new medicine.

How should I take Jaka ?

• Take Jaka exactly as your healthcare provider tells you.

• Do not change your dose or stop taking Jaka without rst talking to your healthcare provider.

• You can take Jaka with or without food.

• Jaka may also be given through certain nasogastric tubes.

ż Tell your healthcare provider if you cannot take Jaka by mouth. Your healthcare provider will decide if you can take Jaka through a nasogastric tube.

ż Ask your healthcare provider to give you speci c instruction on how to properly take Jaka through a nasogastric tube.

• If you miss a dose of Jaka , take your next dose at your regular time. Do not take 2 doses at the same time.

• If you take too much Jaka call your healthcare provider or go to the nearest hospital emergency room right away.

• You will have regular blood tests during your treatment with Jaka . Your healthcare provider may change your dose of Jaka or stop your treatment based on the results of your blood tests.

What are the possible side effects of Jaka ? Jaka can cause serious side effects including:

Low blood cell counts. Jaka may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia), and low white blood cell counts (neutropenia). If you develop bleeding, stop Jaka and call your healthcare provider. Your healthcare provider will do a blood test to check your blood cell counts before you start Jaka and regularly during your treatment with Jaka . Tell your healthcare provider right away if you develop or have worsening of any of these symptoms:

• unusual bleeding

• bruising

• tiredness

• shortness of breath

• fever

Infection. You may be at risk for developing a serious infection during treatment with Jaka . Tell your healthcare provider if you develop any of the following symptoms of infection:

• chills

• aches

• fever

• nausea

• vomiting

• weakness

• painful skin rash or blisters

Cancer. Some people have had certain types of non-melanoma skin cancers during treatment with Jaka . Your healthcare provider will regularly check your skin during your treatment with Jaka . Tell your healthcare provider if you develop any new or changing skin lesions during treatment with Jaka . Cholesterol increases. You may have changes in your blood cholesterol levels during treatment with Jaka . Your healthcare provider will do blood tests to check your cholesterol levels about every 8 to 12 weeks after you start taking Jaka , 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 Jaka , 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 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 Jaka , including:

ż swelling, pain or tenderness in one or both legs

ż sudden, unexplained chest or upper back pain

ż shortness of breath or dif culty 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 Jaka 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 Jaka 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 Jaka 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 Jaka . 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 Jaka with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at www.jaka .com.

Manufactured for:

Incyte Corporation, 1801 Augustine Cut-off, Wilmington, DE 19803

Revised: September 2021 PLR-JAK-00055

Jaka 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.jaka .com.

E xclusively on Can cer Health.com

Cancer Health Stories

5HDGWKHƓUVW person stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories

Basics

Whether you’re newly diagnosed or a long-term survivor, check out our Basics section on cancer treatment, managing side effects and much more. cancerhealth.com/basics

Science News

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

Katie Couric’s regret | oncology hospital at home | considering a QHZWUHDWPHQW"DVNWKLVƓUVW | mocktail recipe | do you really know what immunotherapy is?

'HOWUD-DPHVZKRKDVƓYHFKLOdren and metastatic breast cancer, has found her true community.

Just diagnosed? Start here. 14 Diary

How ex-triathlete Siri Lindley recovered from acute myeloid leukemia

24 Resources

+RZWRJHWƓQDQFLDOKHOS

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

Faith, family and his new love sustain Giancarlo Oviedo.

Everything Else

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 ZDQWWRGR\RXUƓQDQFLDOVWDELOLW\ your sense of self.

Cancer Health

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

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, ƓQGVVWUHQJWKLQIDPLO\IDLWKDQG ORYH'HOWUD-DPHVZKRKDVƓYH 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).

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 $QGGRQōWQHJOHFW\RXUƓQDQFHV 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).

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

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

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

Cancer Health (ISSN 2688-6200) Issue

(BARNETT) MICHAEL HALLIDAY; (ILLUSTRATION)

If it matters to you, it matters to us.

Meet Thomasina

. She’s a healthcare professional, adept writer, mother, and metastatic breast cancer survivor. When Thomasina first started her journey, she needed the individual attention that only a social worker could provide. She needed the financial assistance to help pay for multiple medications and doctor’s visits. She needed the motivation and tenacity to help others like her. She needed CancerCare. We’re still here for Thomasina, and we are here for you too.

COVID-19 VACCINE BOOSTERS

While most cancer patients UHVSRQGZHOOWR3Ɠ]HU%LR17HFK DQG0RGHUQD&29,'YDF cines, some people do not pro duce enough antibodies after WZRGRVHV%XWJHWWLQJDWKLUG shot may do the trick.

Some blood cancers, like chronic lymphocytic leukemia DQGPXOWLSOHP\HORPDDIIHFW% cells, which produce antibodies. What’s more, some patients take targeted therapies, such as &'RU%7.LQKLELWRUVWKDW LPSDLU%FHOODFWLYLW\:KLOH chemotherapy does not directly WDUJHW%FHOOVLWLQGLVFULPLQDWHO\ NLOOVIDVWJURZLQJFHOOVLQFOXGLQJ stem cells in the bone marrow WKDWJLYHULVHWRDOOEORRGFHOOV

A recent study showed that more than half of blood cancer SDWLHQWVZKRGLGQRWKDYHGH tectable antibodies against 6$56&R9WKHFRURQDYLUXV WKDWFDXVHV&29,'DIWHUWZR YDFFLQHGRVHVZHUHDEOHWR produce antibodies after a third dose; others with low antibody OHYHOVVDZDQLQFUHDVH$QRWKHU study showed a threefold in

ing chemotherapy for solid tumors.

In August, the Food and Drug Administration and the Centers for Disease Con WURODQG3UHYHQWLRQ recommended an DGGLWLRQDOYDFFLQH dose for moder DWHO\WRVHYHUHO\ immunocompro mised people, including those being treated for cancer. The agencies later went further, UHFRPPHQGLQJ3Ɠ]HU%LR17HFK 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 WKHLUZRUNRUOLYLQJVLWXDWLRQ $OODGXOWVZKRUHFHLYHGWKH

als who are not fully protected E\YDFFLQHVSRVWH[SRVXUH SURSK\OD[LVDQGSUHH[SRVXUH prophylaxis using monoclonal antibodies—and possibly oral DQWLYLUDOVLQWKHQHDUIXWXUHŋ could offer a lifeline.

-RKQVRQ -RKQVRQYDFFLQH can get a booster two months DIWHUWKHLUƓUVWVKRW

+RZHYHUDWKLUGRIWKHSDWLHQWV in the blood cancer study still

“We encourage blood cancer SDWLHQWVWRWDNHHYHU\PHDVXUH WRSURWHFWWKHPVHOYHVIURP &29,'E\JHWWLQJYDFFLQDWHG DQGFRQWLQXLQJWRWDNHSUHYHQWD WLYHSUHFDXWLRQVŐVD\V*ZHQ Nichols, MD, of the Leukemia & Lymphoma Society. And when RWKHUVJHWYDFFLQDWHGWKH\DUH QRWRQO\SURWHFWLQJWKHPVHOYHV

Now Approved

Here are the latest new FDQFHUGUXJVDSSURYHG by the Food and Drug Administration:

• Exkivity (mobocertinib)IRUDGYDQFHGQRQVPDOOFHOOOXQJFDQFHU

• Scemblix (asciminib) for chronic myeloid leukemia

• Tivdak (tisotumab vedotin)IRUDGYDQFHG FHUYLFDOFDQFHU

• Welireg (belzutifan)IRU9RQ+LSSHO Lindau syndrome

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 LQFOXGHFRQIXVLRQSRRUPHPRU\DQGGLIƓFXOW\ 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

LUNG

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.

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 EHQHƓWIURPLPPXQRWKHUDS\ 7KHVHƓQGLQJVXQGHUVFRUHWKHLPSRUWDQFHRI 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.

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 SDWLHQWVZKRTXDOLƓHGIRUKRPH

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, DFQRQSURƓWRUJDQL]DWLRQ

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.”

CONSIDERING A NEW TREATMENT? ASK THIS

A majority of clinical trials report that new treatments are more effective than they turn out

WREHƓQGVD

VWXG\LQWKH-RXUnal of the National Comprehensive Cancer Network. 5HVHDUFKHUVZKRDQDO\]HG LQGXVWU\VSRQVRUHG3KDVH,,, UDQGRPL]HGRQFRORJ\WULDOVIURP WRIRXQGWKDW UHSRUWHGIDOVHSRVLWLYHUHVXOWV

Katie’s Regret

“A false positive result means WKDWDFOLQLFDOWULDOFRQFOXGHVWKDW DGUXJKDVHIƓFDF\ZKHQWKH GUXJDFWXDOO\GRHVQRWSURORQJ VXUYLYDOLQDFOLQLFDOO\PHDQLQJIXO ZD\ŐH[SODLQVOHDGUHVHDUFKHU &KDQJ\X6KHQ3K'DQDVVRFLDWH SURIHVVRUDW+DUYDUG0HGLFDO 6FKRRODWWKHWLPHWKLVVWXG\ZDV FRQGXFWHGŏ)DOVHSRVLWLYHUHVXOWV PD\řH[SRVHSDWLHQWVWRDGYHUVH HIIHFWVRIGUXJVWKDWDUHXQOLNHO\ WRSURGXFHPHDQLQJIXOKHDOWK JDLQVŐ3DWLHQWVFRXOGDOVRPLVV WKHRSWLPDOZLQGRZIRUUHFHLYLQJ

RWKHUEHQHƓFLDO treatments while LQFXUULQJDKHIW\ ƓQDQFLDOEXUGHQ KHDGGV6KHQ DQGFROOHDJXHV DGYLVHDPRUH VWULQJHQWVWDQGDUGEHIRUHGUXJ WULDOVHYHQSURFHHGWR3KDVH,,, 6KHQōVDGYLFHIRUSHRSOH FRQVLGHULQJDSRVVLEOHQHZ WUHDWPHQW"$VN\RXURQFRORJLVW QRWMXVWDERXWSRWHQWLDOEHQHƓWV DQGVLGHHIIHFWVEXWDOVRDERXW KRZFRQƓGHQWUHVHDUFKHUVDUH LQWKHUHVXOWVŏ3DWLHQWVVKRXOG seek information on the range RIVXUYLYDOEHQHƓWVLQVWHDGRI MXVWDQHVWLPDWHŐKHVD\Vŏ)RU H[DPSOHŌPRQWKVVXUYLYDO EHQHƓWōLVQRWVXIƓFLHQWO\LQIRUPDWLYH>EXW@Ō7KHVXUYLYDOEHQHƓW LVVRPHZKHUHEHWZHHQVL[DQG PRQWKVōDGGVPRUHLQIRUPDWLRQ,WPHDQVWKDWZLWK FRQƓGHQFHWKHVXUYLYDOEHQHƓW LVDWOHDVWVL[PRQWKVDQGQR PRUHWKDQPRQWKVIRUWKH DYHUDJHSDWLHQWŐ

In her memoir, Going There, former Today show coanchor Katie &RXULFUHŴHFWVRQ 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

Community

Patient advocate Deltra James, 35, lives in Waterbury, Connecticut, with her five children. She has metastatic breast cancer.

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 HDV\,WWDNHVWLPHDQGZLWKƓYH 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.

,GLGƓQGFRPPXQLWLHVWKDW WUXO\UHŴHFWP\VLWXDWLRQ$QG when I did, a funny thing happened. I realized that I not only needed those communities but wanted to reach out and help

others. Now, it’s my time to start giving 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, ƓQDQFLDOVRFLDODQGVSLULWXDO needs. I am mentoring those needing a hand to hold as they navigate their own diagnosis.

To me, it feels like building a FR]\ƓUHRQWKLVFDQFHULVODQG and inviting others to come connect and feel the warmth. Q

)RUPRUHƓUVWSHUVRQHVVD\VJRWR cancerhealth.com/stories

Deltra James and her five daughters all found support.

Newly Diagnosed? Start Here

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 LQIRUPDWLRQ7KHƓUVWVWHS"7DNH a deep breath. Find out how TXLFNO\\RXQHHGWRPDNHGHFLsions about treatment. You may have more time than you realize. +HUHōVKRZWRWDNHFKDUJH

Educate yourself. Learn about \RXUVSHFLƓFFDQFHULQFOXGLQJ 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 ORFDOWHDPPD\ZRUNZLWKD 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 stanGDUGFDUHKDVGUDZEDFNVRULV ineffective, a trial can help you

To read more Basics: cancerhealth/basics

access the newest therapies.

/HDUQWKHULVNVDQGEHQHƓWV of your treatment plan.$VN about the purpose of each

WUHDWPHQWKRZOLNHO\LWLVWR ZRUNIRU\RXDQGZKDWVLGH effects to expect.

Minimize side effects. Pay attention to your symptoms, DQGOHW\RXUPHGLFDOWHDPNQRZ 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

VSHFLƓFV\PSWRPVZKLOHLPSURYing your sense of well-being.

Safeguard your quality of life.

$VNDERXWFDQFHUUHKDEVHUYLFes, palliative care services (for issues such as pain) and survivor resources. Concerned about anxiety or depresVLRQ"5HTXHVWDVFUHHQing by a mental health professional who can KHOS\RXƓQGVXSSRUW

Know your insurance. Cancer care can pose VHULRXVƓQDQFLDOFKDOlenges. Protect yourself by learning what your insurance will cover, how to appeal denials and how to catch billing

HUURUV$VNDERXWZRUNLQJZLWKD ƓQDQFLDOQDYLJDWRU

Connect to support groups.

$VNDERXWFDQFHUVSHFLƓFVXSport groups where you are treatHG/RRNRQOLQHWRR)RUPDQ\ FDQFHUVQRQSURƓWRUJDQL]DWLRQV provide medically reviewed information and connect you with people experiencing exactly what you are. Find them here: cancerhealth.com/resources.

Create a wellness program. (DWLQJZHOOH[HUFLVLQJDQGƓQGing healthful ways to handle VWUHVVFDQKHOSNHHS\RXUERG\ strong and minimize fatigue and other side effects of treatment.

Get help from friends and family.,WōVƓQHWRDVNWKHPIRU VSHFLƓFKHOSVXFKDVSUHSDULQJ meals, helping around the KRXVHSLFNLQJXSFKLOGUHQIURP school, managing bills or just providing entertaining distraction.

Live your life in the present. You are always more than your cancer. Q

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 speakerSKRQH7HDUVŴRRGHGKHUH\HV,IHOWVXFKORYHIRU 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.

end

At the end of December, I got another bone marrow biopsy to check where things stood.

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 ƓQGVWUHQJWK,QHYHUNQHZ,KDG

7KHƓUVWGD\VZHUHQōWSDLQIXOEXWSUHWW\LQ tense. 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.

From left: Siri Lindley claims victory as a triathlete; with her horse Savannah; and with her wife, Rebekah

April 2020

December 2020

August 2020

I got off all medications, except for the prophylactic antiviral drug, which I must WDNHIRUDERXWƓYH\HDUV, 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.

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

2Q0D\,URGH6DYDQQDKIRUWKHƓUVWWLPHVLQFH 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 DWKLVELJHYHQW8QOHDVKWKH3RZHU:LWKLQP\ƓUVW for him since the diagnosis. It energized me.

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.

0\OLIHFRDFKLQJKDVEHHQLQFUHGLEO\IXOƓOOLQJ 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.

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

LIKE MANY YOUNG SOUTH AMERICANS, GIANCARLO OVIEDO

dreamed of becoming a professional soccer player. He rst 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 rst 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 Monte ore Medical Center/Albert Einstein School of Medicine in the Bronx. at 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 rst, they thought it was tuberculosis because I came from a di erent country, even though that was years back,” he says. It wasn’t. Further tests also ruled out cystic brosis. 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—speci cally, 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.

CHEMO AND SURGERY

Oviedo started treatment in the adult oncology department at Monte ore. “I was the youngest patient there,” he says. e plan was to shrink the cancer with chemotherapy and then surgically remove the remaining cells. e rst chemo regimen caused internal bleeding, so he was switched to a di erent

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 o 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 de nitely 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 rst 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 uids 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.

ree 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 con rmed that it was cancer.

CLINICAL TRIALS

It was time for a new strategy. His Monte ore oncologist recommended clinical trials. is opportunity is not universally o ered to people with cancer who might bene t. 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). e high price of treatment and

Giancarlo Oviedo wants young people with cancer to know about clinical trials.

lack of health insurance can be barriers; fortunately, Oviedo’s insurance has covered his treatment costs.

It was early days in targeted therapy, a form of precision medicine that matches a drug to a speci c genetic mutation in someone’s advanced-stage cancer. Nevertheless, biomarker testing revealed a known mutation that made Oviedo eligible for a clinical trial. “ is clinical trial stabilized me,” he says. “I remember I felt nauseous and stu , but it did extend my life for one more year.”

Giancarlo Oviedo and Amanda Mutio getting married in North Carolina, 2020

Oviedo had left Saint Peter’s University and enrolled in Lehman College in the Bronx, nearer to home. “I was going to college, and the days I had the pills, I would just try to rest. I didn’t know much then about accommodations for disabilities because I thought that was more for people in wheelchairs.” Later, his professors did o er accommodations, such as extensions on tests. After a year, his cancer started regrowing, so he left the trial.

More trials ensued. A 2014 MSK clinical trial for an immunotherapy treatment had no e ect on his cancer, so he went o it after six months. In 2015, he started on another clinical trial, testing a treatment that targets a di erent genetic mutation.

Going on the drug might have paused the cancer’s

THE LATINO SURVIVAL BENEFIT

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 LVUHŴHFWHGLQFDQFHUWRR

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

growth, but “the side e ects were the worst,” he says. “I could taste the medicine in my mouth. Every time I coughed—and I cough frequently—I would smell it again. I just couldn’t eat, and I felt like a zombie. I would have to force myself to get out, to study and just do my daily things.” His father intervened, and Oviedo quit the trial. Finally, in 2016, Oviedo started on another targeted therapy, a daily medication for those with NSCLC who have a ROS1 gene mutation. e side e ects have been minimal, and it has kept his cancer in check.

Such positive outcomes are increasingly common in lung cancer treatment. Between the 2009 to 2013 and the 2014 to 2018 periods, the annualized lung cancer death rate fell by half, from 5.0% to 2.4%. New therapies, increased screening and smoking cessation (not a factor in Oviedo’s case) have all contributed to the decrease. With his health stabilized, Oviedo was able to complete his college degree in Spanish literature in 2017— four years later than if NSCLC had not disrupted his life.

SURVIVING THE PANDEMIC

In March 2020, when the coronavirus was beginning to spread across the country, Oviedo traveled to North Carolina with his girlfriend, Amanda Mutio, to visit her

ethnic group, “they experience DVXUYLYDOEHQHƓWŐVD\V$OEHUW 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 populaWLRQVZKHWKHUWKH\ōUHƓUVWRU second generation, tend to have stronger family connections or stronger community connections, and maybe that has

implications for how they’re UHVSRQGLQJWRWKHLUWUHDWPHQWŐ 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.

parents. Right after they arrived, he experienced a fever, loss of taste and smell and di culty 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. at fall, Oviedo returned to New York City for a followup CT scan that showed a “signi cant increase” in his cancer. He had to nd a way to break the news to his young wife. “She got sad,” he says, “but thank God for our faith, because it was di cult 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 nonpro t, 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 e ects 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 GLYHUVLW\RIƓFHUDWWKHQRQSURƓW/81*HYLW\ Foundation, “fewer than 10% of these deserving patients with cancer engage in clinical research.”

+HURUJDQL]DWLRQDORQJZLWKWKHQRQSURƓW6WDQG 8S7R&DQFHUWKHGLJLWDOPHGLFDOHGXFDWLRQ FRPSDQ\3ODWIRUP4DQGWKH0RIƓWW&DQFHU &HQWHULQ7DPSDKRSHWRFKDQJHWKDW

7RWKDWHQGLQ6HSWHPEHUWKH\ODXQFKHG 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.”

7ROHDUQPRUHDERXWWKHSURJUDPJRWR 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 de nitely 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.” Q

BY LIZ HIGHLEYMAN

A new generation of precision cancer therapies are easier to tolerate than traditional treatment.

TRADITIONALLY, CANCER TREATMENT HAS RELIED ON surgery, radiation and chemotherapy—or “slash, burn and poison.” While chemotherapy is often e ective, 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 e ects. Until the late 1990s, most people with cancer could expect to receive chemotherapy as their rst, and sometimes only, treatment option. But things are changing, and a growing number of patients are eligible for newer, better-tolerated therapies.

e side e ects 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 e ects 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-con dence. 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. ese treatments home in on tumors, often with less collateral damage to normal cells.

“New advanced cancer treatments are able to more speci cally treat cancer while sparing normal healthy cells, which can result in fewer side e ects,” says Yung Lie, PhD, president and CEO of the Damon Runyon Cancer Research Foundation. “ ese side e ects, 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 di culty 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. e need for better-tolerated treatment is also a big concern for people living with cancer long term.

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 re nements 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 a ect 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 ght cancer.

“An understanding of the genetic changes underlying speci c 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

“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 e ective treatments but treatments with fewer side e ects. 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

David Jackman, MD, of the Dana-Farber Cancer Institute (left), and Yung Lie, PhD, of the Damon Runyon Cancer Research Foundation

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. e 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.)

I often tell people it was the chemo that nearly killed me and not the cancer.

—Megan-Claire Chase (Warrior Megsie) 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.

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. e 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, e orts 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 Je ery, 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.

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 rst drug targeting KRAS, which plays a role in around a third of all cancers.

While each speci c 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 bene t. ese therapies work best for so-called hot, or in amed, tumors that have many mutations and attract T cells (for example, NSCLC and melanoma), but they aren’t very e ective 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. is 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 de cient DNA repair mechanisms, all of which predict response to checkpoint inhibitors.

e 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

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 speci c mutations but have not yet been shown to provide clinical bene ts, such as improved survival.

What’s more, newer treatments come with their own side e ects. 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 in ammation 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 e ects, 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 di cult 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.

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.

“ ough 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 e cacy and toxicity of EGFR inhibitors, nd 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. at 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.”

—Kelly Shanahan, MD

As paradigms change, it’s important to work with your health care team to explore di erent 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.

“ e 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.” Q

)LQDQFLDO$VVLVWDQFH

$6,)&$1&(5:(5(1ō7(128*+021(<0$77(56$5(2)7(1$&+$//(1*( /XFNLO\\RXGRQōWKDYHWRQDYLJDWHWKLVVLWXDWLRQDORQH7KHVHRUJDQL]DWLRQVFDQKHOS

&ƚƧƜƞƫƧƞƭ cancer.net/navigating-cancer-care/ ƓQDQFLDOFRQVLGHUDWLRQV

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).

<RXōOOƓQGDURXQGXSRIQDWLRQDO DQGORFDOƓQDQFLDOVHUYLFHRUJDnizations as well as groups that SURYLGHDVVLVWDQFHIRUKRXVLQJ +RSH/RGJHWUDYHO$LU&DUH Alliance, Mercy Medical Angels), medical costs (Assist Fund, Good Days) and more.

&ƚƧƜƞƫ)ƢƧƚƧƜƢƚƥ$ƬƬƢƬƭƚƧƜƞ &ƨƚƥƢƭƢƨƧ

FDQFHUIDFRUJ

Organized by a coalition of 14 major cancer groups, this database acts as a clearinghouse for \RXUƓQDQFLDOQHHGV7\SHLQ your diagnosis (breast cancer, for example), your ZIP code and the type of aid you’re looking for (such as help with copays or ZLJVDQGDOLVWRIUHOHYDQWRUJDQL]DWLRQVLVDW\RXUƓQJHUWLSV

&ƚƧƜƞƫ&ƚƫƞ

FDQFHUFDUHRUJƓQDQFLDOBDVVLVWDQFH $ORQJZLWKOLPLWHGƓQDQFLDODLG 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.”

&ƚƧƜƞƫ)ƢƧƚƧƜƞƬ FDQFHUƓQDQFHVRUJ &UHDWHGE\WZRQRQSURƓWV

Triage Cancer and The Samfund (see both below), this educational tool kit helps you better understand the impact cancer FDQKDYHRQ\RXUƓQDQFHV

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 WR\RXUVSHFLƓFQHHGV,WōVOLNH WDNLQJDFODVVRQƓQDQFHV

)ƚƦƢƥƲ5ƞƚƜơ IDPLO\UHDFKRUJIDPLO\HOLJLELOLW\ 7KLVJURXSSURYLGHVƓQDQFLDO resources and support through grants, education, resource QDYLJDWLRQDQGJXLGHERRNV)LOO out an online application and it ZLOOPDWFKLWVVHUYLFHVZLWK\RXU needs.

+ƞƚƥƭơưƞƥƥ)ƨƮƧƝƚƭƢƨƧ KHDOWKZHOOIRXQGDWLRQRUJ (YHQLI\RXKDYHLQVXUDQFH\RXU out-of-pocket expenses for FDQFHUFDUHFDQEHRYHUZKHOPing. At Healthwell, underinsured

SDWLHQWVZLWKVSHFLƓFFKURQLF 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 \RXUFDQFHULVFXUUHQWO\FRYHUHG and whether you qualify.

3ơ50$ōƬ0ƞƝƢƜƢƧƞ $ƬƬƢƬƭƚƧƜƞ7ƨƨƥ0$7 PHGLFLQHDVVLVWDQFHWRRORUJ 1ƞƞƝƲ0ƞƝƬ QHHG\PHGVRUJ

Search these two databases to ƓQGRXWZKHWKHUSKDUPDFHXWLFDO FRPSDQLHVRIIHUSDWLHQWƓQDQFLDO assistance programs for your medications.

7ơƞ6ƚƦƟƮƧƝ WKHVDPIXQGRUJ

The fund helps young adult cancer VXUYLYRUVHVFDSHPHGLFDOGHEW E\RIIHULQJGLUHFWƓQDQFLDODVVLVtance as well as online support, webinars and education.

7ƫƢƚƠƞ&ƚƧƜƞƫ WULDJHFDQFHURUJ

Although it doesn’t offer direct ƓQDQFLDODLG7ULDJH&DQFHUSURYLGHVDGYLFHRQXQGHUVWDQGLQJ and managing your bills so you GRQōWRYHUSD\DQGJHWVWXFNZLWK unauthorized charges. You can also learn how to appeal denials RIFRYHUDJHDQGQDYLJDWHOHJDO issues, such as disability insurance (see Solutions, page 32).

Discover more resources: FDQFHUKHDOWKFRPUHVRXUFHV

LIFE WITH CANCER

Shakespeare, Meet Leukemia

Doreen Zetterlund, 60, lives in Southern California. She has chronic lymphocytic 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 ORZEXGJHWDQGVWXGHQWƓOPV 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 6//0\ƓUVWRQFRORJLVWZDV 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

,ZDVŴRXQGHULQJLQVKRFN Dr. Google told me my life exSHFWDQF\ZDVƓYH\HDUV,GLG 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

effective, with manageable side effects. I learned that I may have a normal life span, with periodic treatment of the disease and, possibly, long remissions in between.

Doreen Zetterlund turned her love of learning toward saving her own life.

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.

,DPƓYH\HDUVLQWRWUHDWPHQW 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.” Q

Photos By Koury Angelo & Matt Winkelmeyer

Stand Up To Cancer Ambassadors TIFFANY HADDISH & MARLON WAYANS

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 MXVWWKHƓUVWVWHSWRZDUGDXWKHQWLFZHOOQHVV

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

Spiritual Support

Rabbi Mackenzie Zev Reynolds is a palliative care chaplain at Mount Sinai in New York City.

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.

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.

<RXFDQƓQGXVLQLQSDWLHQW 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 JLYHVSDFHIRUSHRSOHWRƓQG 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 UHŴHFWLRQLQWRWKHVHVVLRQV<RX may want to engage in traditionVSHFLƓFSUDFWLFHVRUSUD\HUVWKDW you need some support with. I FDQIDFLOLWDWHWKRVHRUƓQGWKH

You don’t need to be religious to benefit from chaplaincy, says Rabbi Mackenzie Zev Reynolds.

appropriate person who can do so. For people who are not religious or spiritual, I offer VSDFHIRUUHŴHFWLRQDQGH[SUHV sion. I’m led by what’s helpful for a person. There may be creative practices, mindfulness exercises, music or dancing.

+RZFDQVRPHRQHƓQGDSDO liative care chaplain? Start with your provider. You might also check with the chapODLQF\RIƓFHRIDQ\KRVSLWDOWR 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. Q

on your team? cancerhealth.com/team

• 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:

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 SURJUDPV,I\RXōUHHOLJLEOH\RXPD\UHFHLYHWKHVHEHQHƓWVHYHQLI\RXōUHDOVR JHWWLQJSULYDWHGLVDELOLW\EHQHƓWV7KH6RFLDO6HFXULW\$GPLQLVWUDWLRQ66$ DGPLQLVWHUVWZRIHGHUDOORQJWHUPGLVDELOLW\SURJUDPVŋ6RFLDO6HFXULW\'LVDELOLW\,QVXUDQFH66',DQG6XSSOHPHQWDO6HFXULW\,QFRPH66,66$UHTXLUHV 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.

:LWK66',\RXTXDOLI\IRUEHQHƓWVLI\RXDUHŏLQVXUHGŐ meaning that you have worked long enough recently, and KDYHSDLG6RFLDO6HFXULW\WD[HV7KHPD[LPXPPRQWKO\ EHQHƓWIURP66',IRUVRPHRQHZKRLVQRWEOLQGLV SHUPRQWKLQ7KHUHLVDIXOOƓYHPRQWKZDLWLQJSHULRG :LWK66,\RXTXDOLI\IRUEHQHƓWVLI\RXKDYHDORZLQFRPH DQGIHZDVVHWVDQGDUHDJHRURYHURULI\RXKDYHDGLVability. The 2021 federal amount for most people receiving 66,LVSHUPRQWK0RVWVWDWHVDGGDVXSSOHPHQWDOSD\PHQW<RXEHFRPHHOLJLEOHIRUEHQHƓWVWKHƓUVWIXOOPRQWK after your disability began. It’s possible to receive both 66',DQG66,DWWKHVDPHWLPH ,WLVFRPPRQIRUWKH66$GLVDELOLW\EHQHƓWVDSSOLFDWLRQ process to take a long time. One way to speed it up is to VHHZKHWKHU\RXTXDOLI\IRUWKH&RPSDVVLRQDWH$OORZDQFHV SURJUDPZZZVVDJRYFRPSDVVLRQDWHDOORZDQFHV,I\RXU cancer diagnosis is on the list—about 60 are—be sure to include that in your application. Q

-RDQQD)DZ]\0RUDOHV(VTLV&(2RIWKHQRQSURƓW7ULDJH &DQFHUWULDJHFDQFHURUJZKLFKSURYLGHVIUHHHGXFDWLRQRQWKH SUDFWLFDODQGOHJDOLVVXHVWKDWDULVHDIWHUDFDQFHUGLDJQRVLV

Appealing SSA Disability Denials

Most applications for SSA disability

EHQHƓWVDUHLQLWLDOO\ 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 SDUWLQWKHƓUVW 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 \RX\RXPD\ƓOHD lawsuit in federal district court.

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.)

TBladder TKidney TLymphoma

TBreast TLeukemia TMelanoma

TColorectal TLung TProstate

TOther (Please specify.): __________________

Are you currently receiving cancer treatment?

TYes TNo

On a scale of 1 to 5, rate how often you experience the following conditions. (1 = not at all, 5 = very often) Anxiety

Pain T1 T2 T3 T4 T5

Trouble sleepingT1 T2 T3 T4 T5

Have you experienced any change in your appearance because of cancer or its treatment?

TYes TNo

Do you feel isolated as a result of cancer or its treatment?

TYes TNo

How much has cancer or its treatment interfered with your personal relationships?

T$ORWb T6RPHZKDWb TNot at all

How much has cancer or its treatment interfered with your work?

T$ORWb T6RPHZKDWb TNot at all

How much has cancer or its treatment interfered with your sex life?

T$ORWb T6RPHZKDWb TNot at all

+RZPXFKGR\RXZRUU\DERXWWKHƓQDQFLDO burden of cancer or its treatment?

T$ORWb T6RPHZKDWb TNot at all

Has cancer or its treatment ever prevented you from doing what you want to do?

TYes TNo

Have you made any positive changes in \RXUOLIHDVDUHVXOWRI\RXUFDQFHUGLDJQRVLV"b

TYes TNo

Do you consider quality of life issues when PDNLQJWUHDWPHQWGHFLVLRQV"b

TYes TNo

What year were you born?

What is your gender?

TMale TTransgender TFemale TOther

What is your annual income?

TLess than $15,000 T$50,000–$74,999 T$15,000–$34,999 T$75,000–$99,999 T$35,000–$49,999 T$100,000 or more

What is your ethnicity? (Check all that apply.)

TAmerican Indian/Alaska Native TArab/Middle Eastern TAsian

TBlack/African American THispanic/Latino T1DWLYH+DZDLLDQ3DFLƓF,VODQGHU TWhite TOther _________________________

What is your ZIP code? Please

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