Cancer Health Summer 2022

A SMART+STRONG PUBLICATION CANCERHEALTH.COM SUMMER 2022 $3.99

Rebuilding Muscle Strength

SECOND ACTS

A Lung Cancer Diary How Yoga Heals

Bryon Daily

F

L LI IT FE Y

A multiple myeloma survivor’s journey to a new life

Metastatic Breast Cancer: An Actress’s Amazing Story

T C HE I A N 3 RNS C D ID ER A E HN : Clockwise from top: E NU A A London Gray, Benjamin L Q Ball, Adonis Porch and T L U H Ervin O Rogers A

New COVID-19 Protections

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.

CAN536868_CAN538669.indd 2

5/16/22 6:12 PM CAN538668.pgs 05.16.2022 18:19 ESA

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

CAN536868_CAN538669.indd 3

5/16/22 6:13 PM CAN538669.pgs 05.16.2022 18:18 ESA

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.

CAN538895.pgs 05.23.2022 12:15

ESA

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

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

COVER AND THIS PAGE (DAILY): AUDRA MELTON; (HEART SPEECH BUBBLE, IV TREATMENT) ISTOCK

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.

Bryon Daily uses his skills and imagination to boost cancer awareness.

16 SECOND ACTS After his multiple myeloma recovery, Bryon Daily pays it forward to other African Americans, who are at higher risk. BY JENNIFER COOK 20 CANCER HEALTH 25: QUALITY OF LIFE These remarkable individuals are helping people affected by cancer live their best lives.

BY THE CANCER HEALTH STAFF 4 From the Editor A New LIfe 6 Care & Treatment Natural killer cells show promise | women are more prone to side effects | light therapy for better sleep | antihistamines and immunotherapy | new FDA-approved meds 8 News Breast cancer heart risk | sit less, move more | beyond isolation: Jon Batiste and Suleika Jaouad marry | prevention myths | taste rescue 10 Voices Erin Cronican, an actress with metastatic breast cancer, learns from Wit. 13 Basics How people with cancer can protect themselves from COVID-19

14 A Lung Cancer Diary Jeff Meckstroth is an Army veteran, retired firefighter and farmer.

26 Life With Cancer Adam Hayden, who lives with brain cancer, on his Seinfeld moment 28 Your Team How a yoga therapist can help 29 Resources Websites about pancreatic cancer 30 Good Stuff T-shirts to wear anywhere, gifts for guys and garden inspirations 32 Solutions Regaining muscle strength 33 Reader Survey Are you prepared for emergencies?

cancerhealth.com

SUMMER 2022

CancerHealth 3

FROM THE EDITOR

Cancer Health TM

A New Life

4 CancerHealth SUMMER 2022 cancerhealth.com

yourself about Care & Treatment (page 6) and News (page 8). Check out the best ways for people with cancer to protect themselves from COVID-19 (Basics, page 13). Find the best pancreatic cancer websites (Resources, page 29). Learn how a yoga therapist can help anyone with cancer (Your Team, page 28) and how simple exercises can help you regain muscle strength (Solutions, page 32). Discover great gifts (Good Stuff, page 30). And let us know how you prepare for emergencies in your new life (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 Cancer Health (ISSN 2688-6200) Issue No. 18. 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.

Cancer Health is BPA audited.

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

(BARNETT) MICHAEL HALLIDAY; (ILLUSTRATION) ISTOCK

AFTER THE DIAGNOSIS, THE fear and confusion, the treatments, the side effects—the whole emotional roller coaster of the cancer experience—there’s the promise of a new life.

It’s a different life—cancer changes you—but it can be a good one.

That’s what Bryon Daily (“Second Acts,” page 16) discovered after his treatment for multiple myeloma.

He found a new purpose.

The best life possible for people affected by cancer is the theme of our third annual list, Cancer Health 25: Quality of Life (page 20). These remarkable individuals are pioneers in acupuncture, sleep medicine, heart health, sexual health, side effects relief, palliative care, yoga, exercise, fertility, legal rights, health equity, financial lifelines and more.

Sometimes a new life requires confronting deep fears. New York City actress Erin Cronican (Voices, page 10), who has metastatic breast cancer, discovered that onstage, playing a character who has metastatic ovarian cancer in the play Wit. Sometimes, it’s about moving on.

When retired firefighter and farmer Jeff Meckstroth (Diary, page 14) was first diagnosed with metastatic lung cancer, all he and his wife could think about was the worst. But he’s surviving. And one day, he just decided to live in the present—and the future.

Adam Hayden (Life With Cancer, page 26), who lives with brain cancer, is an amazing patient advocate, but— inspired by comedian Jerry Seinfeld— he’s ready for a whole new chapter in his own life now.

You’ll find many paths here. Educate

EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman DEPUTY EDITOR Trent Straube NEWS WRITERS Sukanya Charuchandra; Laura Schmidt 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

FIND US AT

CancerHealth.com TM

• A daily resource for people living with and affected by cancer • Clear, comprehensive prevention and treatment information • News, personal stories, blogs, community forums and more • Sign up online to receive free treatment and lifestyle email newsletters Follow us on:

A SMART + STRONG PUBLICATION Award-winning consumer health care information

CancerHealth_House_Ad_2020_HY.indd 25

2/11/20 11:59 AM RHL18511-00_HouseAd.pgs 02.11.2020 12:01

CARE & TREATMENT

BY LIZ HIGHLEYMAN

NATURAL KILLER CELLS SHOW PROMISE Two treatment approaches using donor or engineered natural killer (NK) cells led to remission in people with blood cancers, recent research shows. NK cells act as sentinels to hunt down malignant cells. Unlike T cells, which are most commonly used for immunotherapy, NK cells don’t have to be customized for each patient, and they are less likely to cause side effects.

As reported at the American Association for Cancer Research Annual Meeting, combining NK cells from umbilical cord blood with a bispecific antibody led to remission in 89% of patients with advanced Hodgkin lym-

phoma. “We were favorably surprised by the quality of tumor responses in patients,” says Yago Nieto, MD, PhD, of the University of Texas MD Anderson Cancer Center.

In addition, the biopharmaceutical company Nkarta recently announced positive results from

a pair of small trials evaluating off-the-shelf CAR-NK cells genetically reprogrammed to target cancer.

In the first study, three out of five people with advanced acute myeloid leukemia who received high doses of a product dubbed NKX101 achieved a complete response. In the second study, five out of six non-Hodgkin lymphoma patients treated with a high dose of another NK cell product, NKX019, experienced remission. In both studies, the treatment was safe and well tolerated, and patients did not experience the severe adverse events sometimes seen with CAR-T therapy.

Women Are More Prone to Side Effects Women are more likely than men to experience adverse events related to chemotherapy, targeted therapy and immunotherapy, according to a recent study.

Joseph Unger, PhD, of the Fred Hutchinson Cancer Research Center in Seattle, and colleagues analyzed sex-based differences in treatment side effects among 23,296 participants in 202 clinical trials. They looked at 13 categories of symptomatic adverse events and 14 categories of objectively measured events, including changes in lab values.

They paid particular attention to hematologic events, such as low blood cell counts.

Overall, women experienced more side effects.

Women were at greater risk than men for symptomatic adverse events (33% versus 28%, respectively) and hematologic events (45% versus 39%). They were also more likely to experience five or more adverse events. What’s more, women had a 34%

6 CancerHealth SUMMER 2022 cancerhealth.com

greater risk for severe side effects—rising to a 49% increased risk among those who received immunotherapy—and they were 25% more likely to experience the most severe types of adverse events. The difference appeared to be driven by severe hematologic side effects.

The researchers suggested that this disparity might be attributable to differences in medication dosage in relation to body size, drug metabolism, adherence or symptom perception. “A better understanding of the nature of the underlying mechanisms could potentially lead to interventions or delivery modifications to reduce toxicity in women,” they wrote.

Light Therapy for Better Sleep

(KILLER CELL) NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES; ALL OTHERS: ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

Customized light therapy may improve sleep quality for breast cancer survivors. Both cancer and its treatments can disrupt the body’s circadian rhythms, leading to fatigue and sleep disturbances. In fact, as many as one third of cancer survivors experience sleep problems.

Horng-Shiuann Wu, PhD, of the College of Nursing at Michigan State University, and colleagues looked at the effect of tailored light therapy on fatigue and sleep disruption in women who had undergone chemotherapy or radiation for breast cancer one to three years earlier.

The women were randomly assigned to receive light therapy at home using bright blue-green light, which has been shown to reset circadian rhythms, or dim red light as a control. Women with a morning chronotype (“larks”) received light exposure in the evening, while those with an evening chronotype (“owls”) were exposed to light within a half hour after waking up in the morning.

After receiving light therapy for two weeks, women exposed to bright light reported a significant decrease in fatigue and sleep disturbances. The bright-light group had better sleep quality, with a shorter delay in falling asleep and longer sleep duration. Unexpectedly, sleep disturbances also decreased in the control group exposed to dim light. “Properly timed light exposure may optimize the therapeutic effect and can be the key for successful light therapy,” the researchers concluded.

—Laura Schmidt

Now Approved Here are the latest new cancer drugs approved by the Food and Drug Administration: • Carvykti (ciltacabtagene autoleucel) CAR-T therapy for multiple myeloma • Kimmtrak (tebentafusp) for uveal melanoma • Opdualag (nivolumab + relatlimab) for metastatic melanoma • Pluvicto (lutetium Lu 177 vipivotide tetraxetan) for prostate cancer For more care and treatment news: cancerhealth.com/science-news

ANTIHISTAMINES AND IMMUNOTHERAPY Antihistamines used to treat allergies may be linked to better response to checkpoint inhibitor immunotherapy, helping to explain differences in treatment response. Histamine—a chemical released by certain immune cells— causes allergic reactions and plays a role in immune response.

Looking at 40 commonly used medications, Dihua Yu, MD, PhD, of the University of Texas MD Anderson Cancer Center, and colleagues found that a specific type of antihistamine— drugs that block histamine receptor H1 (HRH1)—was linked to improved survival. Patients with less histamine in their blood were three times more likely to respond to checkpoint inhibitors, and people with melanoma or lung cancer who took antihistamines had significantly lower mortality and longer survival. What’s more, preclinical studies showed that the interaction between histamines and HRH1 on macrophages in tumors suppressed T-cell activity, while blocking these receptors restored T-cell activation and curbed tumor growth. Conversely, allergic reactions promoted tumor immune evasion and resistance to immunotherapy. The team is now designing clinical trials to test antihistamines plus checkpoint inhibitors.

“There is more work to be done, but we are excited to continue exploring possible therapeutic applications with antihistamines, which offer an inexpensive approach with minimal side effects,” Yu says.

—Sukanya Charuchandra

NEWS

BY BOB BARNETT

BREAST CANCER SURVIVOR HEART RISK Many breast cancer survivors face an increased risk for treatment-induced heart disease, finds a study in the Journal of Clinical Oncology. Researchers at the Fred Hutchinson Cancer Research Center in Seattle compared data from electronic medical records for 13,642 women with breast cancer and 68,202 women without breast cancer. The patients were followed for an average of 14 years.

Researchers focused on chemotherapy agents known as anthracyclines (such as Adriamycin) and the monoclonal antibody trastuzumab (Herceptin); radiation, especially on the left side; and endocrine therapies, such as aromatase inhibitors and tamoxifen. Results showed that women who had received anthracyclines and/or Herceptin had a

high risk for heart failure. (The highest risk was found in women receiving both drugs.)

Heart failure risk was also high in women who received radiation therapy plus aromatase inhibitor therapy.

“We hope to raise awareness that women who are breast cancer survivors must receive comprehensive, ongoing follow-up care and monitoring for cardiovascular risk,” Heather Greenlee, ND, PhD, MPH, a public health researcher at the Fred Hutchinson Cancer Research Center and lead author of the article, told the Fred Hutch News Service.

Sit Less, Move More Cancer survivors who sat for extended periods and engaged in little or no leisure-time physical activity had a fivefold higher risk for death from cancer and other causes, according to study results published in JAMA Oncology.

Chao Cao, MPH, of the Washington University School of Medicine in St. Louis, and colleagues studied 1,535 cancer survivors who were at least 40 years old; they were followed for an average of 4.5 years. The mean age was 65, 60% were women and 83% were white.

Most had overweight (35%) or obesity (38%).

More than half (57%) reported zero minutes of leisure time physical activity per week; another 16% reported less than

the recommended 150 minutes per week. Only 28% reported 150 minutes or more per week. In addition, 35% reported sitting for six to eight hours every day, and 25% spent more than eight hours sitting every day. More than a third (36%) sat for at least six hours a day and had no leisure physical activity.

People who got adequate physical activity had a 66% lower risk for death from all causes and a 68% lower risk for death from cancer compared with those who got little or no such physical activity. Sitting

8 CancerHealth SUMMER 2022 cancerhealth.com

more than eight hours a day more than doubled the risk for cancer-related death compared with sitting less than four hours a day. Not surprisingly, combining inactivity and long hours sitting was the worst: Little or no leisure time activity plus sitting eight or more hours a day was linked with a 4.7-fold increase in cancer-related mortality.

—Sukanya Charuchandra Get more cancer news: cancerhealth.com/news

BEYOND ISOLATION

(BATISTE/JAOUAD) SHUTTERSTOCK.COM; (OGDEN) COURTESY OF COOK FOR YOUR LIFE; ALL OTHERS: ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

In April, musician Jon Batiste, 35, who had just won four Grammys, revealed that he and his longtime partner, Suleika Jaouad, 33, had secretly married earlier in the year—just before her treatment for cancer recurrence.

Jaouad is the best-selling author of Between Two Kingdoms: A Memoir of a Life Interrupted, written after her diagnosis with acute myeloid leukemia in 2011 at age 22. She was declared cancer-free in 2014.

In November 2021, Jaouad learned her cancer had returned more aggressively. She and Batiste secretly tied the knot in February, the night before Jaouad’s second bone marrow transplant, at an intimate ceremony where they used bread ties as wedding bands. Getting married, Batiste told CBS News, was “an act of defiance. The darkness will try to overtake you, but just turn on the light, focus on the light, hold on to the light.”

With omicron surging

in February, Batiste couldn’t be with her in the hospital. “Utter isolation,” is how she described her feelings.

But every day, Batiste composed a lullaby and sent it to her electronically. Says Jaouad, “It felt like he was right there sleeping by my bedside.”

On April 29, Jaouad wrote about what helps her through—and how it’s not “positive” talk of silver linings—in her newsletter, The Isolation Journals (theisolationjournals.substack.com).

“Embedded in these expressions is an impulse to fix the unfixable, to paper over discomfort, to hedge against mortality,” she wrote. “Yet the constant positivity and empty platitudes did not erase my fear and anxiety. In my experience, the only antidote for the hard things is moving toward them, bearing witness to them and saying things as they really are.”

—Laura Schmidt

FACT FINDER

A new website, Cancer FactFinder (cancerfactfinder.org) separates fact from fiction when it comes to cancer prevention. A team at Harvard T.H. Chan School of Public Health summarizes the best evidence. Examples: Claim: Pilots and flight attendants have increased cancer risk.

Bottom line: Flight crew are at increased risk for both skin and breast cancers. There are guidelines aimed at reducing their radiation exposure.

Claim: Birth control pills (oral contraceptives) cause cancer.

Bottom line: Oral contraceptives slightly increase the risk for breast and cervical cancer, yet decrease the risk for endometrial, ovarian and colorectal cancers. Talk with your doctor to find the best contraception for you.

Claim: Induced abortion causes breast cancer.

Bottom line: Neither induced (medical) nor spontaneous abortions appear to increase breast cancer risk.

cancerhealth.com

TASTE RESCUE “Nearly everyone who has been through or is going through cancer treatment, myself included, has had to deal with the rather sneaky side effect of taste changes during chemo,” writes Ann Ogden Gaffney, founder of Cook for Your Life (cookforyourlife.com).

To get rid of a metallic taste, she suggests adding a sweetener, such as maple syrup, as well as acids, such as lemon or lime or vinegar. Acids can also help eliminate an overly sweet taste (keep adding until the taste goes away) as well as a too salty taste. (A squeeze of lemon or lime to water can also help you drink more fluids.) If foods taste overly bitter, add a sweetener. Bland and tasteless? Add salt until the flavors surface. “The good news?

Once chemo is over, your taste buds usually go back to normal,” writes Ogden Gaffney.

SUMMER 2022

CancerHealth 9

VOICES

BY ERIN CRONICAN

Learning From Wit

ON DECEMBER 30, 2021, I TOOK ON THE ROLE OF A lifetime. On a stage in a 75-seat theater in the East Village of New York City, I was honored to play the role of Vivian Bearing— a Stage IV ovarian cancer patient—in the Pulitzer Prize–winning play Wit. Since it was first published in 1995, Wit has played live performances to thousands of appreciative audiences, most of whom likely had their lives touched by cancer in some way.

But many in the audience that avoidance of a “poor night did not know how meaning- me” mentality, I allowed ful this play was to me, a current myself to feel the unStage IV patient. Because, you fairness of the whole see, a little over three years ago, situation. None of us I had a recurrence of breast have brought on our cancer, with mets [metastasis] cancers. It’s indiscrimito my brain, lungs, liver and nate and brutal. bones. I was first diagnosed Why did I get breast with Stage II breast cancer in cancer in my 30s? I had no fam2015, and now it was back— ily history of note. I ate well. with a vengeance.

Exercised. So why me? For the My life expectancy, depending first time, through this play, I on what sources I read, was learned to rage, in a far healthier either two to three years or way than I had imagined was three to five years. It seems I am possible. living on borrowed time, and, I learned the meaning of as such, I felt I needed to do this grace. For so long, I’ve resisted play, to help others understand accolades like warrior, hero, my story through the veil of a inspiration, brave one, fighter. brilliantly written drama.

But in allowing audience memSo I set out to teach others bers from Wit to share their about the intricacies of living admiration, with grace, I got to with cancer. But I found that see how much love there is in what I learned myself was even the community. How we are all more valuable. connected if we only share ourI learned that in order to be selves with purpose. whole, I needed to allow myself I learned that I have so much to grieve. Grieving may include more than inspiration to offer crying. Yes, a lot of crying. from having cancer. I still have a But I also allowed myself to beating heart. I still have goals give in to the rage that has been for what I want to accomplish in building. Despite my lifelong my life. Yes, I still have good

10 CancerHealth SUMMER 2022 cancerhealth.com

Letting herself days. Amid the feel grief and bad days of rage helped chemo side Erin Cronican effects, endless feel whole again. scans, radiation sessions and surgeries, I cherish days of sunshine, playtime with my rescue dogs, cuddles with my spouse, the taste of a good bourbon and the appreciation of great art of all kinds.

When I chose to do Wit onstage, I expected it to change others. I did not expect the biggest change to happen within myself. ■

Erin Cronican is cofounder and executive artistic director of The Seeing Place Theatre in New York City, where Wit was performed. To learn more about Cronican, visit ErinCronican.com.

COURTESY OF ERIN CRONICAN/SHIRIN TINATI PHOTOGRAPHY

Erin Cronican is an actress, singer, director and producer in New York City.

She has Stage IV metastatic breast cancer.

BY LIZ HIGHLEYMAN

BASICS

COVID Protection

ISTOCK

Extra vaccine doses, monoclonal antibodies and antivirals can help prevent severe illness.

IT’S A DIFFICULT TIME IN THE COVID-19 pandemic for people with cancer. As much of society returns to normal, there have been conflicting messages about how much cancer patients are at risk, how well vaccines work for them and how they can best protect themselves.

Research over the past two years has shown that people with cancer are at greater risk for COVID complications, but this risk is not evenly distributed.

People with certain blood cancers and those receiving immunesuppressing treatment are most prone to severe illness and inadequate vaccine protection.

Most people with solid tumors respond well to COVID vaccines, but those with blood cancers may not fare as well. This is also the case for people who use medications that damage antibodyproducing B cells and those who receive stem cell transplants or CAR-T therapy that temporarily wipes out the immune system.

Sometimes, more shots can help. Studies have shown that many cancer patients who receive additional vaccine doses can produce more antibodies.

Experts now say that the initial vaccine series for immunocompromised people, including those undergoing cancer treatment, should be three doses of the Pfizer-BioNTech or Moderna vaccine. Last fall, the Centers for Disease Control and Prevention Learn more cancer basics: cancerhealth/basics

(CDC) recommended a booster— meaning a fourth dose after the initial series—for immunocompromised people. In March, the CDC added a second booster— a fifth shot—for this group.

But antibodies don’t tell the whole story: T cells also play a role and can help prevent severe illness. An experimental vaccine dubbed CoVac-1, designed to induce broad and long-lasting T-cell immunity, may offer greater protection for immunocompromised people with impaired B-cell function.

Unfortunately, some people still are not fully protected even after multiple vaccine doses. For them, post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP) using monoclonal antibodies could offer a lifeline.

Monoclonal antibodies are manufactured proteins that mimic the activity of antibodies that the immune system is unable to produce on its own.

The Food and Drug Administration (FDA) has authorized Evusheld, a combination of two antibodies (tixagevimab plus cilgavimab) administered every six months prior to exposure, to prevent COVID in immunocompromised people. A single dose of Evusheld reduces the risk of symptomatic disease by about 80%. Other monoclonal antibodies are used to prevent COVID after close contact with someone who has the coronavirus.

For people who have already contracted the virus, antiviral treatment is the next line of defense. In December, the FDA authorized Paxlovid (nirmatrelvir plus ritonavir) and molnupiravir (Lagevrio) for people at high risk of progressing to severe COVID. Both pills must be taken within five days of symptom onset.

Paxlovid reduces the risk of hospitalization or death by nearly 90%, while molnupiravir reduces the risk by about 30%.

Monoclonal antibodies and

antivirals are now widely available, but they can still be hard to obtain. Ask your doctor whether you could benefit from Evusheld for COVID prevention and develop a plan for how to get antivirals if you need them. Ask your household members and caregivers to stay up to date with their vaccines. And remember that a well-fitted N95 mask can protect you even if others aren’t wearing them. ■

cancerhealth.com

SUMMER 2022

CancerHealth 13

DIARY

AS TOLD TO BOB BARNETT

A Lung Cancer Diary An Army veteran, retired firefighter and farmer, Jeff Meckstroth, 65, lives in Ohio. He has Stage IV metastatic non-small-cell lung cancer.

I WAS BORN AND RAISED HERE IN PIQUA, Ohio. My dad was a farmer, and I grew up working on the farm, growing corn, soybeans and wheat.

After serving in the Army after high school, I joined the Piqua Fire Department and continued working with my father in farming. I met Rhonda at the fire department in 1990; we began dating in 1995 and married in 1997. We have three grown children. I retired in 2009 and took over full-time management of the family farm. I was also a pilot and a scuba diving instructor.

August 2015 I had a small unproductive cough. I didn’t notice it, although everyone else did. I mentioned it at my annual checkup, and my family doc took an X-ray and saw a spot but wasn’t particularly concerned. I decided to wait until after harvest to check it out.

October 2015 I had a PET scan, and it showed cancer activity in the lungs and throughout my bones—my ribs, spine, neck and hips. Except for the cough, I had no symptoms. I didn’t have any lung cancer family history. I never had a tobacco addiction. I was told I had six months or a year at best. We were numb.

At night, Rhonda and I would just hold each other and cry. We told our children; they all came home.

We had terrible conversations, got a will in place.

It took three surgeries to get a biopsy. But blood and tissue sampling [from the third attempt at a biopsy] confirmed Stage IV metastatic non-smallcell lung cancer with an ALK mutational driver.

That changed everything.

December 2015 I started a targeted therapy that the Food and Drug Administration [FDA] had approved [for the

14 CancerHealth SUMMER 2022 cancerhealth.com

ALK mutation] and noticed a difference within days—I felt 20 years younger. I was on that therapy for over a year.

Jeff and Rhonda Meckstroth; Jeff standing on his combine

December 2016 We learned from an ALK lung cancer support group that brain metastasis was common. We requested an MRI scan, but our oncologist didn’t think it was necessary, as my body hadn’t shown progression. We continued to push. We got approval for a CT scan, which showed one brain tumor.

That let an MRI scan be approved. It showed eight brain tumors. Our oncologist recommended wholebrain radiation [a treatment with significant toxicity], but we were starting to realize that our general oncologist wasn’t up to date.

Rhonda found Alice Shaw, MD, a leading lung cancer researcher at Massachusetts General Hospital in Boston on the internet. She emailed her, explained that I was days away from whole-brain radiation. A shot in the dark but she called. We sent her scans. We did telehealth visits. She told us that I did not need to go through whole-brain radiation, that there was a new targeted therapy.

We found a new local oncologist to work with her.

February 2017 We traveled to Boston, and I started on the clinical trial with the new targeted therapy, which crossed the blood-brain barrier. Within a short time, the therapy had cleared the tumors from my brain, without radiation.

One night, we were sitting around, and I said to Rhonda, “You know, if I didn’t have Stage IV lung cancer, I would be getting a new combine. It could really make things easier for me and also crop-wise.”

Until that moment, we had been thinking only

combination of three IV chemotherapy infusions and myriad medications to negate the side effects.

It was a toxic combo. They were hoping I could get through four cycles. I did five. They dropped the harshest chemo, and after the next infusion, it was reduced to one chemo agent. I stayed on a reduced dose of the targeted therapy too, since it was still working in a lot of areas. I didn’t have nausea—they gave me steroids and anti-nausea medications—but the fatigue steadily got worse. I decided to retire from farming after the fall harvest. months, not years, ahead. We wouldn’t make longterm plans. But that conversation changed our mindset. I bought the combine. And we haven’t looked back since.

(PAPER) ISTOCK; (ALL OTHERS) COURTESY OF JEFF MECKSTROTH

April 2018 As is typical with these drugs, the cancer learns how to mutate around them. I started to have progression in the bones again; new biopsies confirmed the new mutations. At Massachusetts General Hospital with Dr. Shaw, I started on a clinical trial for a third targeted therapy to address the new variant.

We traveled to Boston every three weeks for nearly a year—until the therapy was FDA approved.

I had constipation, diarrhea, high cholesterol and weight gain, but they were manageable with more drugs. I went from someone who never took a pill in my life—not even an aspirin—to taking many pills every day. But I continued working on the farm.

That therapy worked for more than three years.

July 2021 I developed edema [swelling] in my left arm.

Surveillance imaging with a blood biopsy and biomarker testing revealed active cancer in the armpit lymph nodes and scapula. Biomarker testing wasn’t covered by insurance, but the testing company appealed it. It turned out a new variant was driving the cancer.

August 2021 I started on intravenous chemotherapy, in combination with the targeted therapy, to stop or slow down progression. Every three weeks, I got a For more first-person essays, go to: cancerhealth.com/stories

February 2022 I had my last chemotherapy on February 9. We took a break to give my body time to heal.

April 2022 Insurance denied a request, even after appeal, for a PET scan to see if I still had active cancer cells in my bones, my body. We did a bone scan and CT scan of the chest/abdomen, which confirmed new bone mets [metastasis] in the right hip and lumbar spine. We’re restarting IV chemo the first week of May. We’re hopeful about an anticipated new clinical trial for a fourth-generation targeted therapy that’s expected to begin this year.

When I was diagnosed, we were uneducated about the risks of lung cancer, aside from tobacco addiction. I’m sure I was exposed as a firefighter to buildings with lots of toxins. We weren’t aware. We now support efforts to make firefighters eligible for routine lung cancer screenings. We also found out that our home, built in the 1800s with a limestone basement, was high in radon [which causes lung cancer]. What’s shocking is that it costs less than $2,000 to install a system to remove the radon.

We had never heard about biomarker tests or the huge advancements in treating late-stage lung cancer. We had to educate ourselves. I’m 99% sure I wouldn’t be here today if it hadn’t been for people reaching out to me and sharing their experiences and educating us.

For anyone diagnosed with cancer, my message is: Be true to yourself and be as normal as possible.

Be smart, put all the safeguards in place, but then make a mental switch. What’s gonna happen is gonna happen. In other words, buy the combine.

cancerhealth.com

SUMMER 2022

CancerHealth 15

After treatment for multiple myeloma, Bryon Daily pays it forward to other African Americans, who are at higher risk for this cancer.

BY JENNIFER COOK

The first inkling of a problem cropped up that summer, when routine lab tests Five simple words. Yet they sum up a world of experiences showed an elevated protein in his blood and feelings that people often have upon looking back on and urine. His primary care doctor rectheir cancer diagnosis, especially a serious one. There’s a ommended that he see a urologist, who sense of disbelief, of being blindsided, followed by memories was unable to identify the cause.

That autumn, during a game of hoops of all the doctors’ appointments, tests and treatments that mark the line between a former life and a new one that may with a bunch of younger men, Daily caught the ball the wrong way and feel like it comes with a looming end date. jammed a finger. “I didn’t think about it For more and more people, however, treatments change too much because I’ve had similar injuries in the past,” he the story, and there is indeed life after cancer: a different says. But when the finger didn’t improve after a couple of life. The experience may change you and what you con- weeks, he went for an X-ray and learned he had a fracture. sider important. Instead of trying to go back to the way The combination of the elevated protein and the fracthings were, you may feel that it’s time to forge a new path. ture led Daily’s doctor to suspect something systemic, so Bryon Daily, 58, didn’t see it coming. In 2017, he was he sent Daily to see the urologist again as well as a neliving in an Atlanta suburb with Lori, his wife of 26 years; phrologist (kidney specialist) and a hematologist (blood his son, who was in high school; a daughter headed for specialist). The nephrologist suggested that Daily see an college; and another daughter who had just completed oncologist. “Of course, I knew what that meant,” he says.

Daily and his wife were in their kitchen on the evening college. Daily was working in business development and had a side gig as an entrepreneur; his wife was working for of January 25, 2018, when the oncologist called with his the government. He was very active and hit the gym at lab results. Daily had multiple myeloma, a form of blood least three times a week. “I was pretty busy,” he says. “Every- cancer that attacks plasma cells, a type of white blood cell that produces antibodies to fight infection. Over the thing was moving right along.”

16 CancerHealth SUMMER 2022 cancerhealth.com

AUDRA MELTON

“I didn’t see it coming.”

Bryon Daily has a new life now. It’s different, but it’s a good one.

phone, the oncologist told him, “It’s a form of blood cancer that is incurable but treatable.” She went on to say that multiple myeloma is diagnosed in African Americans at twice the rate of the white population.

THE ROAD TO A TRANSPLANT The oncologist discussed a treatment plan: chemotherapy, then a bone marrow transplant in August. It would be autologous—using stem cells from one’s own body instead of from a donor—which eliminates almost all rejection risk.

The first phase was chemotherapy to eradicate cancerous cells and make room for healthy ones to grow after the transplant. Daily went through six months of chemotherapy.

For the last week prior to the transplant, a port provided access to a vein in Daily’s upper chest so that high-dose chemo, carried in a box strapped over his shoulder, could be delivered 24/7. He survived the fatigue, low energy, low appetite, nausea, acid reflux and other side effects by reminding himself that it was a temporary state.

The transplant itself required just a two-night, three-day hospital stay.

During the early days of his treatment, Daily dived into research. “I ask a lot of questions, and I’ll get a second opinion in a heartbeat,” he says. “I hold professionals accountable. But I also feel appreciation—if doctors give me advice that makes sense, I’ll take it.” Thanks to a patient advocate at his oncologist’s office, he tapped into the Leukemia & Lymphoma Society (LLS) for educational resources as well as financial assistance, which helped Daily pay for hospital parking during his frequent appointments.

Throughout his treatment, Daily’s relatives leaned in to support him and one another. His eldest daughter returned home from Houston for a month, and a posse of friends and family rallied around. Daily felt fortunate and grateful as he witnessed the struggles of other cancer patients getting chemo who lacked the same level of support.

well before the COVID-19 pandemic emerged, but the entire household had to wear surgical masks and gloves around him. “We had to wash all my fruits and vegetables and make sure that everything was completely sanitized in the house,” he remembers. The only trips outdoors were daily treks to the hospital, usually with his wife or daughter driving, for tests to make sure his recovery was on track.

Greasy foods were out. “I stayed away from fried chicken, pizza and all the bad stuff,” he says. Besides fruits and veggies, he enjoyed tuna fish and PB&J sandwiches, and he drank lots of water (and still does) to help his kidneys.

Although they were impaired—a common side effect of the cancer—they are stable now, and he has been able to avoid dialysis.

A former college athlete—he ran the 400-meter relay for North Carolina State—Daily was eager to be active, even if it meant only walking around the upstairs of the house at first. When the 90-day quarantine period was up, he returned to the gym for daily fitness walking on a treadmill and weight lifting. He has asthma, and getting back in shape helped him keep it under control. As he grew stronger, he also went for solitary trail rides on a hybrid bike, which helped him think and sleep better.

Daily also exercised his mind to help fend off chemo brain and depression. “Sometimes you can’t really concentrate as well after recovering from something like this, especially if you’re still taking medications,” he says.

Sometimes he’d get emotional when he’d see a TV drama that “hit a nerve.” But as an introspective sort and an avid reader, he “was able to accept that it was OK. A lot of people have mental challenges and mental stress. It’s just part of being human. It should not be a stigma.” During this time, video games—Spiderman PS4 and PS5 were favorites—entertained him and kept his mind occupied.

Daily is still immunocompromised—he takes medications that reduce his immune response. He’s been on meds for four years now and will be for at least another three.

But he has a genetic trait documented to be associated with a good prognosis. And although he was vaccinated

I’M GRATEFUL TO BE ABLE TO GET UP AND NOT BE SUFFERING.

QUARANTINE Post-transplant, Daily quarantined for 90 days because of his heightened risk for infection. It was the fall of 2018,

18 CancerHealth SUMMER 2022 cancerhealth.com

COURTESY OF LEUKEMIA & LYMPHOMA SOCIETY

and boosted against COVID-19, Daily, like so many others, came down with the coronavirus when omicron swept through Atlanta early in 2022. Vaccination can be less effective in people with blood cancers (see Basics, page 13).

Fortunately, it wasn’t even a bad cold, he says, just “a medium cold.” He also received a second booster in April.

PAYING IT FORWARD When a chance to volunteer for LLS came up in 2019, Daily was enthusiastic. “It gave me an opportunity to appreciate my recovery, help others and give back. It was a very rewarding experience.” During his treatment, he was self-employed, managing his own web development and tech support company. Afterward, his own positive experience with being well insured during cancer treatment led him to consider becoming an insurance agent. He had hoped to spread the word that “when something happens like this and you’re unprepared, it can be catastrophic financially.” But sales was not his passion.

As luck would have it, in 2021, a job opened up at LLS. By then, Daily had become a dedicated volunteer, known for raising his hand for tasks, going to events, traveling a little farther, if necessary. “It takes a bit of humility to put yourself out there,” he says. “But after recovering as well as I did, I didn’t have much of an ego at that point. And what’s the worst case? Somebody will learn about [the disease]. Maybe they’ll identify symptoms in one of their relatives, and they’ll get an early diagnosis.” LLS hired him, and in August 2021, he started working as the national community outreach manager for Myeloma Link (see “The Chess Strategy,” right).

The job has been a blessing. “It was an existential experience going through this cancer and coming out the other end,” he says. “It makes you grateful for being able to get up and not suffering. But it also motivates you to do something meaningful, purposeful. When I was convalescing, I thought, I’m 54 years old. I got cancer. What’s going to be my next step? What does the next stage look like?

“And so you think about what’s the best-case scenario— working from home, maybe getting the opportunity to travel, not having to deal with a lot of corporate drama.

And then this [job] kind of falls in my lap. It’s, like, perfect.

And more importantly, it’s purposeful. It gives me something to wake up to and look forward to. I don’t want to just take up space.”

By all accounts, that’s the last thing anyone might say about Bryon Daily. ■

THE CHESS STRATEGY:

Educating Black Communities About Myeloma Myeloma Link (lls.org/myeloma-link) is a Leukemia & Lymphoma Society (LLS) initiative that helps connect Black people, who have double the risk of developing multiple myeloma, and caregivers to trusted free information and expert counseling, facilitating access to care and the latest treatments.

Myeloma Link covers 13 cities, including Atlanta, Cleveland, Dallas, Detroit, the Bronx (New York) and Oakland (California), with substantial African-American populations. Bryon Daily’s job is to support outreach managers in each city, developing strategies to educate the Black community about blood cancers. “A lot of people don’t even know what myeloma is—until they get diagnosed,” he says. “It’s often confused with melanoma.”

The COVID-19 pandemic proved challenging. Many in-person meetings—at churches, for example—were canceled. LLS members pivoted to virtual forums but were concerned that without person-to-person contact, they might miss the 50-something Black men (it’s more common in men than women) they hoped to reach.

So the team got creative. One idea that Daily is helping to implement focuses on playing chess, a popular game in AfricanAmerican barbershops, which tend to be trusted gathering places. Plans are in the works to sponsor chess tournaments while spreading the word about health issues of particular concern in the community: blood cancers, but also sickle cell disease, Daily diabetes and (left) prostate playing chess cancer.

cancerhealth.com

SUMMER 2022

CancerHealth 19

These remarkable individuals are helping people affected by cancer live their best lives.

BY THE CANCER HEALTH STAFF

ACUPUNCTURE. SLEEP. EXERCISE. PALLIATIVE CARE. Fertility. Sexual health. Financial lifelines. Legal protections. Health equity. Side effects relief. Heart health. Yoga. Survivorship. These are some of the many paths toward enhancing quality of life, the theme of the third annual Cancer Health 25 list.

Each of these individuals does extraordinary work to improve the lives of people with cancer. It is our honor to celebrate them.

20 CancerHealth SUMMER 2022 cancerhealth.com

(ANCOLI-ISRAEL) COURTESY OF SONIA ANCOLI-ISRAEL; (BAO) COURTESY OF MEMORIAL SLOAN KETTERING CANCER CENTER; (BLINDERMAN) COURTESY OF CRAIG BLINDERMAN/ALAN BRESSON; (BOOTH) COURTESY OF LISA SIMMS BOOTH/PAUL BLIESE; (BRYANT) COURTESY OF TRIAGE CANCER

Sonia Ancoli-Israel, PhD San Diego, California Sonia Ancoli-Israel, PhD, spent nearly 30 years studying sleep, fatigue and circadian rhythms in people undergoing cancer treatment. Good sleep, which can be elusive for people with cancer, is essential to quality of life and plays a role in response to treatment and recovery.

Ancoli-Israel, 70, was a professor in the department of psychiatry at the University of California San Diego School of Medicine and the director of the Sleep Disorders Clinic at the Veterans Affairs San Diego Healthcare System. Now retired, her groundbreaking research, primarily in women with breast cancer, has shown that sleep, fatigue and circadian rhythms worsen during chemotherapy and that exposure to morning bright light can alleviate the associated symptoms.

Ting Bao, MD New York, New York Ting Bao, MD, 47, the director of Integrative Breast Oncology at Memorial Sloan Kettering Cancer Center in New York City, takes an integrative medicine approach to cancer care, helping patients maintain the best quality of life possible and supporting their treatment goals. Her holistic approach includes diet and lifestyle changes, mind-body therapies, exercise, massage therapy and acupuncture. Born and raised in Beijing, Bao is a board-certified acupuncturist who uses the traditional Chinese medicine technique to reduce treatment-related side effects. Her research aims to better understand the mechanisms and efficacy of acupuncture, yoga and other complementary therapies. Her goal, she says, is “to develop and deliver state-of-the-art, evidence-based integrative oncology care to enhance and potentially extend survival for cancer patients.”

Craig D. Blinderman, MD New York, New York Since the mid 2000s, Craig D. Blinderman, MD, 47, has been advocating for integrating palliative care into a patient’s regular cancer treatment early on. He is the director of the adult palliative care service at Columbia

University Medical Center/New York–Presbyterian Hospital in New York City. In 2010, Blinderman coauthored a groundbreaking study that found that lung cancer patients who received early palliative care were better able to manage their symptoms and pain, enjoyed better quality of life and survived longer. Blinderman is a believer in applying the principles of Buddhism—including listening to others and being fully present in the moment—to the practice of medicine. That means paying attention to what is most important to his patients and to their families.

Lisa Simms Booth Washington, DC Lisa Simms Booth already had deep roots in community activism and social justice when she unwittingly became a patient advocate. It was 2003, and her mom was diagnosed with ovarian cancer. The subsequent eight years, through her mom’s death, informed her leadership roles at the Milken Institute’s FasterCures center and later at the Biden Cancer Initiative. Currently the executive director of the Smith Center for Healing and the Arts, in Washington, DC, Booth, 55, is expanding the center’s reach as a leader in the movement to promote the power of arts in healing. The center develops and promotes healing practices for people with cancer and their caregivers that explore physical, emotional and mental resources that lead to life-affirming changes.

Monica Fawzy Bryant, JD Chicago, Illinois A distinguished cancer rights attorney, Monica Fawzy Bryant, JD, 41, dedicates her time and expertise to helping people with cancer and their caregivers understand the practical and legal problems they may face. Bryant carries out this work through Triage Cancer, a nonprofit she founded with her sister in 2012. As chief operating officer, Bryant oversees the organization, whose mission is to give people living with cancer access to all the resources they need. She also shares her knowledge with others through seminars, media and publications. Bryant is the coauthor of Cancer Rights Law, the first and only book on this subject.

cancerhealth.com

SUMMER 2022

CancerHealth 21

CANCER HEALTH 25: QUALITY OF LIFE

Tony Christon-Walker Birmingham, Alabama As a Black, gay, HIV-positive father in the South, Tony Christon-Walker, 55, has always known what it’s like not to see yourself reflected in your health care system.

But when the HIV advocate and author was diagnosed with colorectal cancer in 2014, he recalls, he received suboptimal care—that is, until he found the Cancer Treatment Centers of America (CTCA) in Georgia. Their process “was great,” says Christon-Walker, who is now cancer-free, “but I didn’t see anyone that looked or identified as I did in the support process.” So he joined CTCA’s Cancer Fighter program to help fill that gap. He also shared his insights with the team rebuilding President Biden’s Cancer Moonshot, which earned him an invitation to the White House for the program’s launch.

Lorenzo Cohen, PhD Houston, Texas Improving the quality of life and clinical outcomes for people in cancer treatment and educating the public about an anticancer lifestyle are key motivators for Lorenzo Cohen, PhD, 58, the director of the Integrative Medicine Program at the University of Texas MD

22 CancerHealth SUMMER 2022 cancerhealth.com

Anderson Cancer Center in Houston. A founding member (and past president) of the Society for Integrative Oncology, Cohen provides clinical care and conducts research on meditation, yoga, tai chi, qi gong, massage, diet, exercise, acupuncture and other integrative strategies to alleviate side effects of treatment and improve quality of life and clinical outcomes. He is a registered yoga teacher and, with his wife, coauthor of the book Anticancer Living.

Don S. Dizon, MD Providence, Rhode Island Don Dizon, MD, specializes in women’s cancers, but to many, he’s best known for his work promoting sexual health after cancer treatment for both women and men, his advocacy for LGBTQ people living with cancer and his social media presence. Dizon, 52, is founder of the Sexual Health First Responders Clinic at the Lifespan Cancer Institute at Rhode Island Hospital and a professor of medicine at the Warren Alpert Medical School of Brown University. A gay man with three children, he is on a mission to make oncology clinical trials more inclusive of LGBTQ people. As a founding member of the Collaboration for Outcomes in Social Media in Oncology, he recognizes the importance of direct communication among patients, doctors and researchers.

Chris Draft Atlanta, Georgia In 2010, after 12 years in the NFL, linebacker Chris Draft retired, ready to settle down with longtime sweetheart Keasha Rutledge. A few months later, she was diagnosed with Stage IV lung cancer. “She was 37 years old, in amazing shape and did not have a smoking history,” Draft, 46, told Stand Up To Cancer, a group he collaborates with to fund cancer research projects. “We learned the most important fact about lung cancer—that anyone can get it.” Rutledge died in 2011, but not before she and Draft got married and launched the Chris Draft Family Foundation and the Team Draft initiative, with its annual Super Bowl Challenge, to raise awareness about lung cancer, promote screenings and improve quality of life.

“Early detection,” he notes, “is a game changer in transforming the survival rate in lung cancer.”

(CARLSON) COURTESY OF THE UNIVERSITY OF CALGARY/SVETLANA YANOVA; (COHEN) COURTESY OF MD ANDERSON CANCER CENTER; (CHRISTON-WALKER) COURTESY OF TONY CHRISTON-WALKER; (DIZON) COURTESY OF DON S. DIZON; (DRAFT) COURTESY OF CHRIS DRAFT

Linda E. Carlson, PhD Calgary, Canada The Enbridge Research Chair in Psychosocial Oncology at the University of Calgary Cumming School of Medicine in Canada, Linda E. Carlson, PhD, 52, has been studying the effects of mindfulness-based programs on cancer survivors for 25 years. One of her studies found that a yoga and mindfulness program was more effective than group therapy for alleviating lingering stress and anxiety in breast cancer survivors. This research also revealed that combining yoga with mindfulness helps keep protective cell structures known as telomeres from becoming shorter, which occurs with long-term stress. Carlson has worked hard to remove barriers for cancer patients who cannot attend the program. She published MindfulnessBased Cancer Recovery and partnered with eMindful.com to create a 12-week program anyone can access online.

(FUENTES) COURTESY OF EILEEN FUENTES; (GANZ) COURTESY OF UCLA HEALTH; (HERANDEZ-ALDAMA) COURTESY OF LORIANA HERANDEZ-ALDAMA; (KAUR) COURTESY OF SANDEEP (ANU) KAUR/GINNY FILER PHOTOGRAPHY; (KY) COURTESY OF PENN MEDICINE

Eileen Z. Fuentes New York, New York Eileen Z. Fuentes was 34, juggling a job and a family, when she was diagnosed with Stage II triple-negative breast cancer.

She had aggressive treatment, including chemo and a double mastectomy, then gave herself a crash course in nutrition and complementary techniques to help her heal. She became certified as a holistic health coach and patient navigator and worked as a patient navigator at Columbia University Medical Center’s Herbert Irving Cancer Center, where she led bilingual wellness classes.

Now 48, Fuentes has a master’s degree in health education and manages the patient relations department at Memorial Sloan Kettering Cancer Center in New York City. Her passion: helping people with cancer, particularly Latina and Black women, on their journey from illness to wellness.

Patricia Ganz, MD Los Angeles, California Before it was established practice, oncologist Patricia Ganz, MD, pioneered the assessment of physical and emotional quality of life for people with cancer. She helped create the field of cancer survivorship. Her goal is to ensure that patients’ voices are included in treatment decisions. Ganz, whose career spans more than 40 years, is a professor in the School of Medicine and in the School of Public Health at the University of California at Los Angeles (UCLA) and director of UCLA’s Jonsson Comprehensive Cancer Center. In a UCLA interview, she said, “You never know when you treat a patient whether they will be a survivor or not. And when you are successful, it’s magic.”

Loriana Hernandez-Aldama Atlanta, Georgia Emmy Award–winning TV anchor and health reporter Loriana HernandezAldama, 49, uses her journalism skills to share the lessons she learned while overcoming acute myeloid leukemia in 2014 and then, five years later, breast cancer. She believes everyday wellness—from diet and physical fitness to spiritual and financial health— prepares us to overcome future health crises, a concept she calls “pre-habilitation”—hence her book’s title, Becoming

the Story: The Power of PREhab. As the founder and CEO of ArmorUp for Life, a patient-advocacy group, she speaks out for underserved and marginalized communities and encourages everyone to improve their health, get fitter, reduce risks and enjoy a higher quality of life.

Sandeep (Anu) Kaur, RDN Ashburn, Virginia When Sandeep (Anu) Kaur, RDN, 50, first worked with cancer patients as a registered dietitian, her patients shared their stresses and fears with her. Over time, she responded to these deep concerns by evolving her practice to embrace nourishment of the mind and the body. Her own bout with ovarian cancer as well as her Kundalini and Hatha yoga practice taught her that a mind-body approach could complement medical treatment. She launched the courses Befriending Cancer and Nutrition to Nourishment to teach cancer survivors the principles of food as medicine to help them make lifelong lifestyle changes, embrace compassionate self-care and enhance immunity by reducing inflammation. Kaur is also a nutritional consultant for the National Cancer Institute’s division of cancer prevention.

Bonnie Ky, MD Philadelphia, Pennsylvania Growing up in Queens, New York, Bonnie Ky, MD, learned key lessons from her Taiwanese immigrant parents: an unconditional love of family, a tireless work ethic, and empathy and caring for those around her.

She harnesses those values in her work in cardio-oncology, a new field that focuses on the detection, monitoring and treatment of cardiovascular disease after cancer treatment.

She leads a clinical translational program funded by the National Institutes of Health and the American Heart Association and has authored more than 180 papers on topics such as how treatments for breast, kidney, prostate and lung cancers and lymphomas affect cardiovascular risk. Ky is the inaugural editor of the journal JACC: CardioOncology and a tenured associate professor of cardio-oncology at the University of Pennsylvania.

“Cardiotoxicity,” she told The ASCO Post, “is detectable, treatable and preventable.”

cancerhealth.com

SUMMER 2022

CancerHealth 23

CANCER HEALTH 25: QUALITY OF LIFE

Maryam Lustberg, MD, MPH New Haven, Connecticut Maryam Lustberg, MD, MPH, 47, the director of the Breast Center at Smilow Cancer Hospital and chief of breast medical oncology at the Yale Cancer Center, specializes in improving long-term outcomes for breast cancer patients who have developed side effects from treatment.

But her interests extend beyond managing side effects to encompass a broader vision of supportive care for patients and survivors across all cancers. She is the president of the Multinational Association of Supportive Care in Cancer and an associate editor for the Journal of Cancer Survivorship. Lustberg collaborates with national patient advocacy organizations with a focus on improving shared decisionmaking and increasing patient engagement in clinical trials.

She is also known for her mentorship of up-and-coming oncologists.

Smitha Mallaiah, MSc, C-IAYT Houston, Texas Smitha Mallaiah, MSc, C-IAYT, 35, a senior mind-body intervention specialist at the University of Texas MD Anderson Cancer Center, focuses on integrating evidence-informed yoga therapy into conventional cancer care. Working alongside other integrative medicine clinicians, Mallaiah provides yoga therapy to inpatients and

24 CancerHealth SUMMER 2022 cancerhealth.com

outpatients from diagnosis to treatment and through the end of life. On the research side, she develops and evaluates yoga interventions designed for people with different types of cancer. “Yoga is not just a physical exercise—it is a mind-body discipline and a way of life,” Mallaiah says. “Mind-body practices, such as yoga, give people the opportunity to accept their situation and face it and feel more in control.”

Melvin Mann Atlanta, Georgia Diagnosed with chronic myeloid leukemia (CML) at age 37 and given three years to live, Melvin Mann enrolled in the first clinical trial for a targeted therapy for CML in 1998. Now 65, Mann has the distinction of being the longest living patient on that drug (Gleevec), and his mission is to pass on his good fortune. He runs marathons and does bike races to raise money for the Leukemia & Lymphoma Society (LLS) and organizes drives for the nonprofit Be The Match, which supports bone marrow transplants. Now LLS’s national community outreach director, Mann was instrumental in extending the reach of Myeloma Link, which spreads blood cancer awareness to Black people, who are disproportionately affected by this disease.

Ann Partridge, MD, MPH New Bedford, Massachusetts A dedication to improving care and outcomes for people with breast cancer during and after treatment has helped make Ann Partridge, MD, MPH, 52, a leader in the field of cancer survivorship for people with all kinds of cancer. The Boston-based oncologist is the director of the Adult Survivorship Program at the Dana-Farber Cancer Institute, where she leads a team that helps patients live their best lives beyond cancer. She is also the cofounder and director of Dana-Farber’s Young and Strong Program for Adults with Breast Cancer, which provides young adults with the comprehensive care, support and education they need to survive and thrive. Her research explores the medical and psychosocial issues that these patients can face at diagnosis, during treatment and throughout survivorship.

(LOPRINZI) COURTESY OF MAYO CLINIC; (LUSTBERG) COURTESY OF MARYAM LUSTBERG; (MALLAIAH) COURTESY OF MD ANDERSON CANCER CENTER; (MANN) COURTESY OF MELVIN MANN; (PARTRIDGE) COURTESY OF DANA-FARBER CANCER INSTITUTE/SAM OGDEN

Charles Loprinzi, MD Rochester, Minnesota Reducing distressing symptoms of cancer and its treatments is the life’s work of Charles Loprinzi, MD, 69, a medical oncologist who has worked at the Mayo Clinic Cancer Center in Rochester, Minnesota, since 1985. He previously served as codirector of the center’s cancer prevention and control program. Loprinzi leads a team that has conducted more than 150 clinical trials aimed at understanding and minimizing symptoms related to cancer and its treatments, including chemotherapy-induced neuropathy and cancer-related lack of appetite and weight loss. Much of his work has focused on helping to improve quality of life for breast cancer patients during and after treatment.

(RAVENELL) NYU LANGONE HEALTH; (SCHMITZ) COURTESY OF PENN MEDICINE; (VERINI) COURTESY OF CANCERCARE; (WATSON) COURTESY OF EXPECT MIRACLES FOUNDATION; (WOODARD) COURTESY OF MD ANDERSON CANCER CENTER

Joseph E. Ravenell, MD New York, New York Unlike the doctor’s office, which many Black men associate with fear and mistrust, the barbershop is a safe haven and a place of loyalty and trust, according to Joseph E. Ravenell, MD, 48, an associate professor of medicine at the NYU Grossman School of Medicine in New York City. Through the Men’s Health Initiative, a network of more than 200 barbershops and other community institutions in New York City, Ravenell helps thousands of older Black men detect and treat hypertension, colorectal cancer and prostate cancer. His community outreach also brings better breast cancer care to underserved women and helps reduce cancer burdens in immigrant communities in Brooklyn.

Kathryn Schmitz, PhD, MPH Harrisburg, Pennsylvania A former dancer and exercise instructor, Kathryn Schmitz, 59, PhD, MPH, has played a major role in establishing the clinical benefits of exercise for cancer survivors. The distinguished professor of public health sciences at Pennsylvania State University’s College of Medicine has published seminal work on exercise and breast-cancerrelated lymphedema, written books for the public and professionals alike and helped establish the Strength After Breast Cancer rehabilitation program. As president of the American College of Sports Medicine, Schmitz led the Moving Through Cancer program, which aims to ensure that all people living with and beyond cancer are engaged in appropriate exercise and rehabilitation programming as a standard of care. As she told the National Cancer Institute, “My hope is that someday, if you ask anyone walking down the street whether exercise is valuable for cancer survivors, the response will be an emphatic yes.”

Christine Verini New York, New York Christine Verini is the executive vice president and chief operating officer at CancerCare, a national organization that supports quality of life for people affected by cancer by providing a range of free professional emotional, practical and financial support services. Verini

oversees day-to-day operations, including social services, business development, financial assistance and communications. In 2019, Verini was named one of PharmaVOICE magazine’s 100 most inspiring people. Verini also serves on the board of HealthyWomen, which works to help women make informed health choices, and as cochair of the Metastatic Breast Cancer Alliance Awareness Task force.

Samantha Watson Boston, Massachusetts Samantha Watson, 44, is no stranger to medical bills. She had cancer twice— bone cancer as a senior in college and leukemia nearly two years later. By the time she was cancer-free, she’d fallen behind her classmates—she had no job experience and plenty of debt. She started The Samfund in 2003 to help young adult cancer survivors like her. Over the past 19 years, the fund has given out over $3 million to help young cancer survivors pay for everyday necessities, like groceries and rent, and provided information and support, since having cancer in your 20s or 30s can be isolating. As Watson learned firsthand, cancer isn’t free. But when you’re in danger of falling off a financial cliff, she says, The Samfund can help catch you.

Terri Woodard, MD Houston, Texas A devoted advocate for expanding access to fertility care for people affected by cancer, Terri Woodard, MD, 46, established the Oncofertility Program at the University of Texas MD Anderson Cancer Center in 2012. It offers comprehensive fertility preservation and family-building services for men, women and children.

Woodard’s research focuses on the psychosocial aspects of fertility preservation, including interventions that promote effective decision-making and alleviate the distress associated with potential cancer-related infertility. An associate professor in the Department of Gynecologic Oncology and Reproductive Medicine at MD Anderson, Woodard and her team created the award-winning, interactive web-based decision aid Pathways, which supports women with cancer who may be considering fertility preservation. ■

cancerhealth.com

SUMMER 2022

CancerHealth 25

LIFE WITH CANCER

BY ADAM HAYDEN

Telling You for the Last Time I GREW UP ON SEINFELD, SO his 1998 Broadway show–turnedalbum, I’m Telling You for the Last Time, meant something to me. Jerry Seinfeld buried the rich onstage material that formed his stand-up career and the “show about nothing.”

He vowed never again to use that material.

The best comedians convince you they’re funny before delivering the first punch line. Similarly, when I deliver my material, audiences see buzzwords like patient-centered and patient advocacy, and they decide what to expect before your sick body takes the stage.

A good bit holds a mirror to

our lives with candor, courage and comedy. I once started a medical ethics talk with a projected image of my brain under MRI that showed a 7-centimeter surgical cavity in the right parietal lobe. “I needed this diagnosis like a hole in the head,” I quipped.

Now, it’s time to let go. I’ve honed my material for five years, and I’ve had a good run with it.

Five years of my life drafting, crafting, revising, delivering—it’s exhausted, and so am I. A film crew spent two days with me and my spouse recently, and at the end of filming, I knew my best material was no longer mine. I’d handed it over.

I’m telling you for the last time.

It’s not the doctors; it’s the system. And when we see each other, doctors and patients, the admins are in trouble.

In fleeting moments of restorative justice amid toning alarms and proning patients, a healer catches your eyes in theirs and you are seen. But mostly, it’s wristbands and gowns, murmurs outside your inpatient door and rounding physicians so busy they carry their sealed Tupperware lunches into the room to look at your incision.

We can learn so much about an individual’s cancer without even meeting that person. But to know Adam a disease is not to Hayden

26 CancerHealth SUMMER 2022 cancerhealth.com

know the person who has it.

We’re rich on data but short on humanity.

I’m telling you for the last time.

I don’t care about clinical language. I only learned the jargon so that the doctors would hear me. Maybe it’s time to use ours: We speak in experience and emotion.

I’ll dismiss your suggestion that I wait for our visit to hear the results. I’ll read the test report when it’s posted because it’s my data, my body. I don’t need your paternalism; I need your partnership.

I don’t care what you think about Dr. Google. I read everything I can. It’s my life, and I won’t let your distrust or skepticism of my capacity to absorb medical information stand in the way of pursuing my care as an equal member of the team.

You sequenced my disease 30 years ago, the one I share with thousands of others to revolutionize medicine, but genomic sequencing is a luxury, not a standard of care, and all my friends are dying.

Five years of brain cancer, from diagnosis to major milestones—I’ve told that for the last time. It’s a new show, a new set, new bits to work out. I don’t know where this will lead. But you can’t live with brain cancer and stay safe, and you can’t keep a comedian off the stage. ■

To read more of Adam Hayden’s blog posts, go to: cancerhealth.com/hayden

COURTESY OF ADAM HAYDEN

Adam Hayden, 39, is a writer and speaker living with brain cancer. He lives with his wife and three sons in Indianapolis.

PersonalCare

FinancialCare SurvivorCare PetCare EducationalCare EmotionalCare

CancerCare...

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.

800-813-HOPE (4673) | WWW.CANCERCARE.ORG

YOUR TEAM

BY ABBY SAJID

Yoga Therapist

Columbia University Irving Medical Center mind-body specialist Leigh Leibel, MSc, coedited Yoga Therapy Across the Cancer Care Continuum.

At what stage is it beneficial?

Yoga has applications at each stage of care, including diagnosis, treatment, posttreatment and survivorship, chronic cancer, recurrence or metastasis and end of life. There’s also a new area called pre-habilitation in which yoga has great utility.

It’s the period after diagnosis when we are helping our patients prepare physically and emotionally for their treatment.

How does yoga help people with physical issues?

The physical practice helps with functional movement, helping people with cancer gently get activity into the day, especially during chemotherapy and radiation, when you might be experi-

your toes. If you are in the chemotherapy infusion suite, you can do yoga. Many of my patients do yoga in bed. It could be stretching or tightening and releasing a muscle. Breath is a big part of yoga, whether you’re lying in a bed, sitting in a chair or are in a yoga class. Even people who are at the end of life can do some kind of yoga.

Leigh Leibel, MSc, encing fatigue. volunteering in Studies show Cambodia, where that a physical she studied the yoga practice Buddhist mindfulness that can help with now informs her osteoporosis cancer care induced by treatment. It’s a gentle, mild way to help prevent sarcopenia [muscle loss], which is common in cancer patients. A yoga program can help prevent and manage lymphedema [painful buildup of lymph fluid after the removal of lymph nodes] because it keeps the lymph flowing. Plus, yoga can help with joint pain (which can occur, for example, in women taking aromatase inhibitors for hormone-positive breast cancer) by moving the joints and through breathing and meditation to help reframe pain.

Can anyone do yoga?

Yes. You don’t have to stand on a mat and lean over to touch

28 CancerHealth SUMMER 2022 cancerhealth.com

Any tips on finding a yoga therapist who works in cancer?

Yoga therapists are generally available at hospitals, academic medical centers and cancer centers. It’s a graduate-level profession that requires a master’s or doctoral degree. These kinds of practitioners are highly trained in the clinical application of yoga in oncology populations.

However, people who have moved into survivorship could work with a yoga teacher who has a different level of training.

You can go to the International Association of Yoga Therapists and search their database of certified therapists.

What inspires you?

I come to this work as a cancer survivor myself and as a clinician working with people with cancer.

What inspires me is sharing these yoga practices and techniques to help improve the lives of 34 million cancer survivors worldwide. ■ Who’s on your team? cancerhealth.com/team

COURTESY OF LEIGH LEIBEL

What are the benefits of practicing yoga during cancer care?

Yoga unites mind, body and spirit, and that’s why it is so beneficial for people who have a cancer diagnosis: It addresses the whole person. Studies of people with cancer have found that it improves overall health, quality of life and physical functioning and reduces psychosocial distress, musculoskeletal symptoms, nausea, anxiety, depression, sleep disturbance, fatigue and cognitive issues associated with treatment. National guidelines recommend yoga during and after cancer treatment.

BY LAURA SCHMIDT

RESOURCES

Pancreatic Cancer THESE ORGANIZATIONS PROVIDE UP-TO-DATE INFORMATION on the latest treatment options, emotional support for patients and caregivers, access to care and financial support.

American Cancer Society

Cancer.Net

cancer.org

cancer.net

In addition to its general resources, which include a free consultation with a cancer information specialist (800-227-2345) and financial support for lodging and transportation to treatment, the American Cancer Society offers people with pancreatic cancer specific information on early detection, warning signs, prevention and more. Downloadable PDFs include information on pancreatic cancer treatment options, survival rates, steps to take after treatment, living as a cancer survivor and follow-up care to live well and monitor the possibility of a second cancer.

CancerCare

ISTOCK

cancercare.org

Learn how to cope with your illness by connecting with an oncology social worker for support and case management via the free Hopeline at 800-813-HOPE (4673) and discover support groups for pancreatic cancer patients and caregivers. What’s more, CancerCare offers a grant funded by the Hirshberg Foundation to provide financial support to people with pancreatic cancer as well as educational workshops, publications and podcasts dedicated to pancreatic cancer.

Discover more resources: cancerhealth.com/resources

The American Society of Clinical Oncologists, the world’s largest cancer organization, runs this excellent patient site. Here, you can find a pancreatic cancer guide with in-depth, up-to-date oncologist-reviewed information on diagnosis and treatment, clinical trials and how to join one, and advice on how to cope with the physical and emotional side effects of treatment as well as information for caregivers.

Let’s Win! Pancreatic Cancer letswinpc.org

An online community for sharing information about innovative, science-based treatments for pancreatic cancer, Let’s Win! Pancreatic Cancer is run by the Lustgarten Foundation, the world’s largest funder of pancreatic cancer research. The site hosts an extensive collection of resources for patients, families and caregivers, including information about scientific research, clinical trials, complementary and integrative therapies, advocacy, financial assistance, pain management and nutrition.

Specific resources for Black women, the LGBTQ community, Native Americans, Latinos and more are also available.

Pancreatic Cancer Action Network pancan.org

PanCAN knows how important it is to be supported throughout the entire cancer journey. The organization funds research, provides patient services and participates in grassroots advocacy on behalf of people affected by pancreatic cancer.

The website features information about diagnosis, treatment options by stage, diet and nutrition, side effects of treatment, advocacy, palliative care and more. Case managers are available to provide free oneon-one support and information (877-272-6226).

The National Pancreas Foundation pancreasfoundation.org

This organization funds research and supports patients with all forms of pancreatic disease, including pancreatic cancer.

The site features information on pancreatic cancer risk factors, early detection, diagnosis, staging, treatment, cuttingedge research, palliative care and complementary therapies as well as patient stories, support groups for caregivers and patients and “CancerCoach” live webinars.

cancerhealth.com

SUMMER 2022

CancerHealth 29

GOOD STUFF

BY BOB BARNETT

A HEALING SUMMER

T-shirts you can wear anywhere, a gift for guys and natural inspirations for everyone

Looking for a gift for a guy with cancer—or for yourself? Consider the You Got This Get Well Gift for Men from Just Don’t Send Flowers (justdontsendflowers.com), a site featuring gifts for people in treatment or recovering from cancer. This package contains a men’s duffle gym bag, a microfleece throw blanket, an acrylic drink tumbler (for hydration), Burt’s Bees lip balm, cushioned crew socks and a puzzle book. It comes in a decorative box packaged in cellophane, with a ribbon and a message tag ($74.99). The website also offers gifts for women, children and people recovering from specific cancers and treatments (such as chemo and radiation). You can also design your own gift collections.

“Every summer, when my rugosa rose creates a complexly intertwined blossom that steams with fragrance, I smell it for the billionth time,” writes Karen Hugg in Leaf Your Troubles Away: How to Destress and Grow Happiness through Plants (paperback, $19.95). The book will be published on July 15 but can be preordered now.

“This is why I go on. How I cope. How, in years past, I’ve survived the stresses of a fastpaced tech job and my husband’s stage four cancer treatment (which, thankfully, he survived).... And today, as I deal with the aftereffects of the pandemic and my sister’s cancer diagnosis, plants offer me silent, steady hope for renewal,” Hugg reflects.

A certified ornamental horticulturist, Hugg fills the pages with delightful anecdotes, insights from psychology and medicine, practical tips and fun exercises designed to share the healing power of even small moments in nature. She outlines her seven destressing strategies for “green leisure,” her method for “dialing into nature’s healing benefits.” She describes the many benefits of Japanese “forest bathing” (shinrin-yoku), the ancient Buddhist practice of walking very slowly through a forest to mindfully take in its sights, sounds and aromas.

Not up for a long walk? Consider a dwarf hinoki cypress bonsai to bring the forest indoors.

When Garrison Wollam, a leukemia survivor , was going through the toughest parts of treatment, he’d say to his wife, “Cancer is dumb.”

She’d reply, “So dumb.”

Wollam is a third-grade teacher, and since he couldn’t exactly wear one of those popular T-shirts that say “F--- Cancer” in front of schoolchildren, he started Cancer is Dumb (cancerisdumb91.com) to serve others in the same situation. The site sells T-shirts, coffee mugs, bumper stickers and more featuring this and other slogans. Shown: Champion Women’s Heritage Cropped T-Shirt ($31.08), So Dumb Tie-Dye Tee, Cyclone (unisex, $39.33) and Athletic Joggers (unisex, all-over print, $37.32).

Cancer is Dumb donates 20% of proceeds to St. Jude Children’s Research Hospital. “It’s my favorite charity,” says Wollam. “I had pediatric cancer, so they have become very important to me.”

Find more products to make life easier: cancerhealth.com/good-stuff 30 CancerHealth SUMMER 2022 cancerhealth.com

IF YOU SMOKED,

GET SCANNED.

CAN538665.pgs 05.16.2022 10:40

ESA

SOLUTIONS

BY YOLANDA BRUNSON-SARRABO, NASM-CPT

Improving Muscle Strength These gentle exercises can help you become stronger and more flexible.

ARMS Benefits: Arm mobility and strengthening of biceps, shoulders and upper back Bear hugs. Standing or seated upright, hold a 2-pound dumbbell in each hand in front of you at shoulder level, and then cross your arms, as if giving yourself a hug. Do 10 reps, and then repeat the set. As you gain strength, you can build up to a faster momentum.

Arm rotations. Holding a dumbbell in each hand, stretch your arms outward at chest level and rotate them in a circular motion clockwise and counterclockwise. One rep is a full rotation clockwise and counterclockwise. Do a set of five reps, and then repeat with a set of 10 reps.

muscular function and help rebuild lost muscle mass. You don’t need a complex program—it’s better to take the correct steps in small modules to build tolerance. (Consult your cancer care team before starting any fitness program to determine whether it is right for your needs.) Let’s focus on three areas essential to movement: arm mobility, leg stability and knee strength.

LEGS Benefits: Flexibility and balance Standing marches.

With your arms straight in front of you at shoulder level and your back straight, march in place. Do 10 reps, and then repeat the set.

Heel raises. Stand straight, with your feet shoulder-width apart and your hands on your waist or your arms extended outward at chest level. Raise your heels off the floor while keeping your knees straight. Hold the stance for five seconds, and then slowly lower your heels back to the floor. Do 10 reps, and then repeat the set.

KNEES Benefits: Strengthening hamstrings and quads while improving balance and knee strength Single-leg squats. Stand straight with your hands on your waist. Keeping your back straight, bend slightly into a half-sitting position while lifting one leg off the ground. Keep the standing leg balanced on the floor with your heel down. If you feel steady, descend so your hips are slightly lower than your knees, and slowly stand up. Do five slow reps on each leg. Repeat the set.

Yolanda Brunson-Sarrabo, NASM-CPT, BCS, is a certified fitness trainer who specializes in working with clients who have chronic conditions. She is a cancer survivor.

32 CancerHealth SUMMER 2022 cancerhealth.com

(WEIGHTS) ISTOCK; (ILLUSTRATIONS) NINA UY

CANCER AND ITS TREATMENT CAN LEAD TO A decline in muscle strength and function. Fatigue— not to mention pain—may cause you to be less active, and treatments such as chemotherapy and steroids can weaken muscles. This can affect your quality of life. For example, just taking a walk can become difficult if you have issues with balance.

Fortunately, simple exercises can improve

SURVEY

Do you keep up-to-date hard copies of your medical and financial records in a safe place? ❑ Yes ❑ No Do you keep up-to-date electronic copies of your medical and financial information? ❑ Yes ❑ No

ARE YOU PREPARED? It’s important to have a plan in place in case of an emergency. Depending on the situation, it may be difficult to get the cancer care you need. Please take our survey and let Cancer Health know how prepared you are in the event of a disaster.

Do you have a will? ❑ Yes ❑ No Do you have an advance health care directive? ❑ Yes ❑ No

In general, how prepared are you to handle an emergency situation? ❑ I’m ready for anything. ❑ I’m somewhat prepared. ❑ I’m not at all prepared.

What is your gender? ❑ Male ❑ Female ❑ Transgender ❑ Other

Do you keep an emergency supply of all the medications that you take? ❑ Yes ❑ No

What is your current level of education? ❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree or higher

Do you keep an emergency supply of food and water in your home? ❑ Yes ❑ No

What is your annual household income? ❑ Less than $15,000 ❑ $15,000–$34,999 ❑ $35,000–$49,999 ❑ $50,000–$74,999 ❑ $75,000–$99,999 ❑ $100,000 or more

Do you keep a well-stocked and up-to-date first aid kit in your home? ❑ Yes ❑ No Do you have an evacuation action plan in case of an emergency? ❑ Yes ❑ No Have you shared your emergency plans with others? ❑ Yes ❑ No

ISTOCK

Do you keep a copy of important phone numbers and passwords in a safe place? ❑ Yes ❑ No

Do you keep your emergency gear packed in an easy-to-carry bag or container? ❑ Yes ❑ No

What year were you born? _ _ _ _

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? _ _ _ _ _

Scan this QR code with your smartphone to take this survey at cancerhealth.com/survey.

Or email a photo of your completed survey to website@cancerhealth.com.

IN THE SEARCH FOR A CURE, THEY KNOW EXACTLY WHERE THEY STAND. ON THE SHOULDERS OF GIANTS. For 75 years, Damon Runyon has provided funding to scientists who bet their careers on high-risk, high-reward hypotheses, concepts, and strategies. In this time, Damon Runyon scientists have advanced cancer research exponentially – because each one builds upon the achievements of those who came before.

As we celebrate this milestone of scientific achievement, we honor the scientists who have contributed to this legacy and continue to carry it forward. With them, we look to the future.

Alexandra-Chloé Villani, PhD Current Damon RunyonRachleff Innovator

To learn more, visit damonrunyon.org

Gordon J. Freeman, PhD Damon Runyon Fellow ’79–’81

CAN536668.indd 1

2/8/22 12:36 PM CAN536668.pgs 02.08.2022 13:01 ESA