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Meet Thomasina. She’s a healthcare professi professional, io onal, adept ade writer, mother, and metastatic metastatiic breast cancer survivor. When Whe Thomasina Thomasi first started her journey, she needed the individual indiividual attention attentiion that only a social worker could provide. She needed the financial financiial assistance to t help pay for multiple medications mediications and doctor’s visits. She needed the motivation m and tenacity to help others like her. She needed CancerCare. CancerCa We’re still here for Thomasina, and we are here for you too.
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CONTENTS
E xclusively on
Cancer Health.com Cancer Health Stories 5HDG WKH ƓUVW person stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories
Matt McClain works with nonprofits to help cancer patients.
Basics
Whether you’re newly diagnosed or a long-term survivor, check out our Basics section on cancer treatment, how to manage side effects and more. cancerhealth.com/basics
Science News
Learn about the latest treatment and prevention advances, cure research and conference news. cancerhealth.com/science-news
COVER AND THIS PAGE (MCCLAIN) ARI MICHELSON; (HEART SPEECH BUBBLE AND DNA) 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.
10 BECOMING MR. MELLOW When kidney cancer wreaked havoc on Matt McClain’s life, selfadvocacy and psychotherapy helped. BY JENNIFER COOK
2 From the Editor Toward Better Days
clinical trials and what makes a great oncologist.
4 News Breast cancer memorial garden | loneliness is a risk | celebrity diagnoses: raising awareness and spreading misinformation | banning carcinogens such as hair relaxers and menthol cigarettes
9 Basics All about clinical trials
6 Care & Treatment Early immunotherapy for lung cancer | expanded lung cancer screening | chemo-free combo for bladder cancer | Pluvicto delays prostate cancer progression
15 Resources Information for African Americans
8 Voices Lung cancer survivor and blogger Dann Wonser shares insights on
17 Reader Survey Share your thoughts about using complementary therapies.
14 Your Team Talaya Dendy is a Minneapolisbased cancer doula and Hodgkin lymphoma thriver.
16 Good Stuff Products that can help boost your quality of life
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FROM THE EDITOR
Toward Better Days
2 CancerHealth WINTER 2024 cancerhealth.com
clinical trials—and what he looks for in an excellent oncologist. Our Care & Treatment section on page 6 rounds up the latest research on lung, bladder and prostate cancers, and our News items on page 4 cover celebrity diagnoses, misinformation on social media, bans on carcinogens (including menthol cigarettes and some hair relaxers) and an advance look at a breast cancer memorial garden slated to open in San Francisco’s Golden Gate Park in 2024. Offering D VDQFWXDU\ IRU UHŴHFWLRQ DQG WKH healing balm of nature, the garden is sure to boost visitors’ quality of life.
EDITOR-IN-CHIEF Trent Straube MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman EDITOR-AT-LARGE Bob Barnett 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 SMART + STRONG PRESIDENT AND COO Ian E. Anderson EDITORIAL DIRECTOR Oriol R. Gutierrez Jr. 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. 24. Copyright © 2024 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.
TRENT STRAUBE Editor-in-Chief trents@cancerhealth.com Twitter: @trentonstraube
(STRAUBE) JOHNNIE CUELLAR; (ILLUSTRATION) ISTOCK
ACCESSING CANCER TREATMENT and making it to the other side of a diagnosis are huge accomplishments. But for many folks, quality of life is just as important, if not more so, and that’s a pervasive theme throughout this winter 2024 issue of Cancer Health. When Matt McClain was dealing with kidney cancer and related health complications, he felt his life slipping out of control. “I would go down these multiday spirals of anxiety. It was just DZIXO Ő KH UHFDOOV LQ RXU FRYHU SURƓOH on page 10. For help, he turned to a psychotherapist, whom he still sees once a month. “That experience was life-changing,” says McClain, who was declared NED—to have no evidence of disease—in 2023. “It has helped me, not just with my cancer but with everything.” On page 13, McClain shares tips on surviving the cancer roller coaster and improving quality of life. For support and help on their cancer journeys, more folks are turning to cancer doulas. What’s that? We interview one—Talaya Dendy, also a Hodgkin lymphoma thriver—for our Your Team column. Turn to page 14 to learn more. Have you used complementary therapies, such as acupuncture or yoga, to help manage the symptoms of cancer and improve your quality of life? Share your experiences with us by taking the survey on page 17. Among the other offerings you’ll ƓQG LQ WKLV LVVXH ZH H[SODLQ WKH EDVLFV of clinical trials on page 9, and on page 8, blogger Dann Wonser, who has survived 17 years with lung cancer, recounts his lifesaving experiences in
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Cancer Health
HELP CANCER PATIENTS MAKE NEW MEMORIES FOR YEARS TO COME Stand Up To Cancer, with support from Visit Myrtle Beach, is working to push WYVNYLZZ MVY^HYK [V ÄUK UL^ HUK IL[[LY treatments so cancer patients can thrive.
Join this mission at StandUpToCancer.org
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NEWS
BY TRENT STRAUBE
BAYS members build a public space in San Francisco’s Golden Gate Park. The Bay Area Young Survivors %$<6 D QRQSURƓW VXSSRUW group for people diagnosed with breast cancer at age 45 or younger, is funding a Breast Cancer Memorial Garden in San Francisco’s Golden Gate Park. The sanctuary will offer the healing balm of nature and serve as a place of solidarity for women DQG D VSRW IRU UHŴHFWLRQ IRU DQ\one affected by breast cancer. In the works for eight years, the BAYS project has been approved by the city and its parks department; the goal is to break ground and open in 2024.
BAYS is currently receiving bids from contractors, but due WR LQŴDWLRQ WKH FRVW LV greater than originally planned. “We now must raise the remaining $200,000 in order to break JURXQG DQG IXOƓOO WKH YLVLRQ Ő BAYS member and memorial garden co-coordinator Nola Agha tells Cancer Health. “We are seeking philanthropic partners and contributions to support this effort. Despite this surprise surge in costs, we’re motivated to ensure there is a sacred space to honor over 100 BAYS members who have died and all those
Illustrations thousands of of the space to people who die open in 2024 each year of metastatic EUHDVW FDQFHU Ő Founded in 2003 by Angela Padilla and Deb Mosley, BAYS has grown to over 1,000 members. The group is run entirely by volunteers, Agha notes. “We believe that is a testament to the fortitude of cancer patients, that they can navigate their own treatment, support others and still manage to gift an amazing public amenity to San Francisco DQG WKH FRPPXQLW\ EH\RQG Ő
Loneliness Is a Risk U.S. adults who live alone are at higher risk of dying of cancer compared with those who live with other people, found a study by American Cancer Society researchers. Overall, adults living alone had a 1.32 times higher risk of cancer death, and the risk was greater among white adults and those with higher education levels. The study shows the need for appropriate training of clinicians and
4 CancerHealth WINTER 2024 cancerhealth.com
screening for living alone or in social isolation, noted the report’s lead author Hyunjung Lee, PhD. Possible solutions, she said, include “patient navigation programs for this population to increase uptake of and adherence to cancer screening, timely diagnosis, treatment and attendance of medical appointments.” Get more cancer news: cancerhealth.com/news
(MEMORIAL GARDEN) DESIGN BY JULIANNA FECSKÉS PHILLIPS AND PENN PHILLIPS OF INSIDEOUT DESIGN; IMAGE BY GUSTAVO VILLAR; (MAN) ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)
BREAST CANCER MEMORIAL GARDEN
CELEBRITY DIAGNOSES
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Raising awareness—and spreading misinformation In recent months, several bold-faced names have openly discussed their cancer journeys, no doubt helping educate WKH JHQHUDO SXEOLF &RXQWOHVV $PHULFDQV SUREDEO\ ƓUVW learned about multiple myeloma when U.S. Congressman Steve Scalise, a Republican from Louisiana, posted on social media in September that he was undergoing treatment for the blood cancer. Scalise, the majority leader, has remained in the legislative spotlight, proving that in many cases, folks with cancer can continue leading their active lives. Similarly, supermodel Linda Evangelista revealed that she had been diagnosed with cancer twice: breast cancer in 2018 after an annual mammogram and then, despite having had a bilateral mastectomy, cancer of the pectoral muscle in 2022. In November, actor Erik Jensen, who has appeared in The Walking Dead, Mr. Robot, Mindhunter and more, announced he had Stage IV colorectal cancer, spurring discussions, for example, about what the different stages mean. Then there’s Suzanne Somers, who died of complications of breast cancer a day before her 77th birthday and 23 years DIWHU KHU ƓUVW EUHDVW FDQFHU GLDJQRVLV %HORYHG IRU WKH VLWFRP Three’s Company and for the ThighMaster exercise device she created, Somers worried cancer advocates when she published Knockout, a book questioning the appropriateness of chemotherapy to treat common cancers. She also promoted so-called bioidentical hormones as an alternative treatment for menopause. As KFF Health News wrote upon her passing, “Somers’ legacy [is] tainted by celebrity medical misinformation.” “It’s clear that cancer misinformation is a pervasive problem across social networks,” noted New York University School of Medicine’s Stacy Loeb, MD, in a National Cancer Institute article on the dangers of promoting unproven treatments. It’s important, she said, that health From left: Linda care providers “have an open discussion Evangelista, Erik with people about what they’ve seen on Jensen, Steve social media, and to share evidence-based Scalise and Suzanne Somers cancer information.”
Banning Carcinogens The Food and Drug Administration )'$ LV LQ WKH ƓQDO VWDJHV RI EDQQLQJ PHQWKRO FLJDUHWWHV DQG ŴDYRUHG FLJDUV DV D ZD\ WR SUHYHQW SHRSOH IURP WDNLQJ XS VPRNLQJ 0RVW \RXWK ZKR VPRNH XVH PHQWKROV ŏ)RU WRR ORQJ WREDFFR FRPSDQLHV KDYH EHHQ HQDEOHG WR SURPRWH PHQWKRO FLJDUHWWHV WR WKH %ODFN FRPPXQLW\ SUH\LQJ SDUWLFXODUO\ RQ %ODFN \RXWK Ő ZURWH WKH &RQJUHVVLRQDO %ODFN &DXFXV WR WKH )'$ LQ D OHWWHU VXSSRUWLQJ WKH EDQ ZKLFK FRXOG WDNH HIIHFW LQ ,WōV HVWLPDWHG WKDW WKH EDQ ZLOO VDYH OLYHV LQ \HDUV 7KH )'$ DOVR SURSRVHG EDQQLQJ KDLU VWUDLJKWHQLQJ SURGXFWV WKDW FRQWDLQ IRUPDOGHK\GH D FKHPLFDO OLQNHG WR XWHULQH FDQFHU IHUWLOLW\ LVVXHV DQG UHVSLUDWRU\ SUREOHPV 7KH SURGXFWV DUH SRSXODU DPRQJ %ODFN ZRPHQ ,Q IDFW IRXU ZRPHQ DUH VXLQJ /ō2U«DO DQG RWKHU PDQXIDFWXUHUV FODLPLQJ WKDW WKH KDLU UHOD[HUV FDXVHG WKHP WR GHYHORS EUHDVW DQG XWHULQH FDQFHUV )LQDOO\ WKH (QYLURQPHQWDO 3URWHFWLRQ $JHQF\ (3$ KDV SURSRVHG EDQQLQJ WULFKORURHWK\OHQH 7&( DQ ŏH[WUHPHO\ WR[LF FKHPLFDO NQRZQ WR FDXVH VHULRXV KHDOWK ULVNV LQFOXGLQJ FDQFHU QHXURWR[LFLW\ DQG UHSURGXFWLYH WR[LFLW\ Ő 7&( LV IRXQG LQ FOHDQLQJ DQG IXUQLWXUH FDUH SURGXFWV GHJUHDVHUV EUDNH FOHDQHUV WLUH UHSDLU VHDODQWV DQG RWKHU SURGXFWV 7KH (3$ LQGLFDWHV WKDW VDIHU DOWHUQDWLYHV DUH DOUHDG\ DYDLODEOH
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CARE & TREATMENT
BY LIZ HIGHLEYMAN
Earlier Lung Cancer Immunotherapy Immunotherapy, which has transformed treatment for metastatic non-small-cell lung cancer (NSCLC), may also be an option at earlier stages, according to studies presented at the European Society for Medical Oncology Congress. Around a third of NSCLC patients have tumors that can be surgically removed, but the risk of recurrence is high. The Food and Drug Administration recently approved the immune checkpoint inhibitor Keytruda (pembrolizumab) for the treatment of Stage IIA to IIIB NSCLC before and after surgery. In the Phase III KEYNOTE-671 trial, participants were randomized to receive neoadjuvant (pre-surgery) Keytruda or a placebo plus chemotherapy before tumor removal; afterward, they received adjuvant (post-surgery) Keytruda or a placebo alone. Event-free survival (EFS) rates at two years were 62% in the Keytruda group and 41% in the placebo group, representing a 42% reduction in the risk of disease progression, recurrence or death. The median overall survival time was 52.4 months in the placebo group but was not reached in the Keytruda group because a majority were still alive.
Likewise, in the Phase III CheckMate-77T trial, a similar patient population was randomly assigned to receive another checkpoint inhibitor, Opdivo (nivolumab), or a placebo plus chemotherapy before surgery followed by adjuvant Opdivo or placebo alone. EFS rates at 18 months were 70% versus 50%—again, a 42% risk reduction. As in WKH .H\WUXGD VWXG\ 2SGLYR UHFLSLHQWV ZHUH ƓYH times more likely to have a pathological complete response, meaning no remaining cancer in the removed tissue. Overall survival data are not yet mature in this study, and follow-up is ongoing. ŏ7KHVH ƓQGLQJV DGG WR HYLGHQFH WKDW WKH SHULRSerative immunotherapy path gives patients with operable lung cancer an opportunity to live longer without their cancer returning,” says Tina Cascone, MD, PhD, of MD Anderson Cancer Center.
On November 1, the American Cancer Society (ACS) recommended that more people should be screened for lung cancer, which has a high mortality rate in part because many patients are diagnosed at a late stage. The updated recommendation calls for annual CT screening for people ages 50 to 80 who have a smoking history of at least 20 pack-years (equivalent to one pack a day for 20 years). The previous guidelines recommended screening for those ages 55 to 74 with at
6 CancerHealth WINTER 2024 cancerhealth.com
least a 30 pack-year smoking history who currently still smoke or stopped less than 15 years ago. The new guidelines no longer recommend discontinuation of screening for people who quit years ago, as recent research shows that their risk remains elevated. Experts estimate that the expanded guidelines will make an additional 5 million people eligible for screening, which “could make a real difference in saving lives,” says ACS senior vice president Robert Smith, PhD.
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EXPANDED LUNG CANCER SCREENING
Chemo-Free Combo PLUVICTO DELAYS for Bladder Cancer PROSTATE CANCER The immune checkpoint inhibitor Keytruda PROGRESSION (pembrolizumab) plus the antibody-drug conjugate Padcev (enfortumab vedotin) improved overall survival for previously untreated people with inoperable urothelial carcinoma, which usually involves the bladder. The Phase III KEYNOTE-A39 trial evaluated Keytruda plus Padcev, a monoclonal antibody that delivers a potent chemotherapy drug directly to tumors, versus platinum-based chemotherapy DV ƓUVW OLQH WUHDWPHQW IRU SHRSOH ZLWK ORFDOO\ advanced or metastatic urothelial cancer. Progression-free survival—meaning patients were still alive without worsening disease—was twice as long with the Keytruda-Padcev combination compared with chemotherapy (12.5 versus 6.3 months). Likewise, overall survival was 31.5 months with the combination versus 16.1 months with chemotherapy, representing a 53% reduction in the risk of death. The complete response rate, indicating full tumor regression, was 29% in the Keytruda-Padcev arm versus 13% in the chemotherapy arm. The median duration of response was seven months in the chemotherapy arm but was not reached in the Keytruda-Padcev arm because a majority of patients were still responding. Treatment was generally safe, but side effects were common; 56% in the Keytruda-Padcev group and 70% in the chemotherapy group experienced severe treatment-related adverse events. “We’ve never beaten chemotherapy” for overall VXUYLYDO LQ WKH ƓUVW OLQH VHWWLQJ VDLG 7KRPDV Powles, MD, of Barts Cancer Centre at Queen Mary University of London, whose presentation earned a standing ovation. These results, he added, “open a new chapter” for these patients, who face an urgent need for new therapies. For more care and treatment news: cancerhealth.com/science-news
Pluvicto (lutetium 177 vipivotide tetraxetan), a radiopharmaceutical that delivers radiation directly to cancer cells, reduced the risk of disease progression for men with metastatic prostate cancer who had not yet received chemotherapy. Pluvicto is currently approved for patients with PSMA-positive metastatic castration-resistant prostate cancer that has progressed despite androgen-blocking therapy and chemotherapy. The Phase III PSMAfore trial tested the therapy in a broader population of men with earlier-stage metastatic cancer who had not yet received chemotherapy but had used an oral androgen receptor pathway inhibitor, such as Xtandi (enzalutamide) or Zytiga (abiraterone). They were randomly assigned to receive Pluvicto or switch to an androgen blocker they hadn’t yet tried. Pluvicto reduced the risk of radiographic disease progression or death by 59% compared with a new androgen blocker, doubling progression-free survival time from a median of 5.6 to 12.0 months. What’s more, people who received Pluvicto reported improved quality of life, including less pain. However, study participants who experienced disease progression were allowed to cross over from an androgen blocker to Pluvicto—and more WKDQ GLG VRŋPDNLQJ LW GLIƓFXOW WR FRPSDUH overall survival. Novartis plans to request expanded approval of Pluvicto next year for men with metastatic prostate cancer who have not received chemotherapy. “We look forward to a future where Pluvicto may be a viable therapy for patients in need of alternative, earlier options,” says study investigator Oliver Sartor, MD, of the Mayo Clinic.
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VOICES
BY DANN WONSER
Defining a Great Oncologist FRIENDS AND FAMILY, We got the scan results last week from my latest CT. The cancer shrank again! Cue WKH ƓUHZRUNV 1R QHHG WR ZDLW until the Fourth of July! But we’re not relying on shortterm results. I was scheduling a ŴLJKW WR 'HQYHU WR JHW LQWR RQH of four trials at the University of Colorado when the Rybrevant (amivantamab) trial in Portland, Oregon, my hometown, came up. Despite this, Genevieve DQG , ŴHZ PLOHV WR VLJQ informed consents and have my tissue biopsy tested in Denver. Why would I do that when I already had an option? Because we didn’t know if Rybrevant would work—or for how long. I’m four months into this trial. If it hadn’t worked—or when it stops working—it would take time to start over in another trial. That time can be crucial. Here’s my example. It took a week or two to get an appointment in Denver. Then, it took more than a week for my tissue biopsy to be sent from Portland. It took another three weeks to ƓQG RXW , GLGQōW TXDOLI\ IRU DQ\ RI their trials. That means it would KDYH WDNHQ ƓYH RU VL[ FULWLFDO weeks—while my cancer was JURZLQJŋWR ƓQG RXW , ZRXOG have to start over elsewhere. I wish I could say bureaucratic delays are rare, but I’ve run into similar snags at two other 8 CancerHealth WINTER 2024 cancerhealth.com
Dann Wonser hospitals. In one has survived instance, it took a recurring doctor weeks to lung cancer RUGHU D OLTXLG thanks to clinical trials. biopsy test, even though I prodded him every day—and then I had to urge the hospital’s lab for another week or two to send the sample to the other lab. I know if I need a new trial, I already have a foot in the door in Denver. This might cut weeks out of the process when every day makes a difference. A huge factor in such matters is your oncologist. Here is what I think makes an excellent oncologist (in my case, for lung cancer): 1. This is the most important thing: Get a specialist for your type of cancer. I’ve had seven oncologists. The two who almost
got me killed were not specialists. 2. As soon as your cancer shows progression, they order a new biopsy. (Always get a new biopsy!) 3. They collaborate and discuss options with you, and they make a plan you can agree with. Time is critical! 4. They consider clinical trials. Everyone I know with active cancer who has lived 10 years or more has been in at least one clinical trial, and some have been in six or seven! I’m on No. 3. 5. They strategize about when to stop your current treatment. If you are entering a trial, it will have a “washout period”—the time you must be off your old treatment before starting the new one. If it takes six weeks to get into a new trial, your cancer could go wild. Remain on the old drug as long as possible. 6. They make contingency plans. Ask, “What do we do if this treatment fails?” and don’t let them leave the room without giving you an answer. 7. They really care. Nothing has made me feel safer than when my oncologist said that even if I were in a trial somewhere else, she would always have my back. I’ll get off my soapbox now. I hope treatment is going well for you, and if not, that you have a plan of attack. Love, Dann Q
To read more by Dann Wonser and others, go to: cancerhealth.com/blogs
COURTESY OF DANN WONSER
Blogger Dann Wonser, who has survived 17 years with non-small-cell lung cancer, shares his insights on clinical trials—and what he looks for in an oncologist.
BY LIZ HIGHLEYMAN
BASICS
Clinical Trials
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Study participation can be a gateway to better cancer care. DEVELOPING MORE EFFECTIVE and better tolerated cancer treatment depends on clinical trials of experimental therapies. Participating in a study can be a good way to access cutting-edge treatment and contribute to science, but it’s important to ZHLJK WKH ULVNV DQG EHQHƓWV Clinical trials involve multiple steps: Preclinical: Experimental WKHUDSLHV ƓUVW XQGHUJR WHVWLQJ LQ a laboratory, followed by animal studies. Promising activity at this stage does not necessarily mean a drug will work in humans. Phase I: Early trials evaluate tolerability, look for early signs of antitumor activity and collect information about pharmacokinetics, or how a drug is processed in the body. Phase II: Mid-level trials test whether a new therapy appears safe in a larger group and gather IXUWKHU LQIRUPDWLRQ DERXW HIƓcacy, such as tumor shrinkage. Phase III: The largest and longest clinical trials test the safety and effectiveness of a new therapy compared with other options, with the goal of delaying disease progression and improving survival. Phase IV: After a therapy has been approved, post-marketing studies evaluate how well it works in the real world. Less common side effects may show up only when a therapy is used by more people over a longer period.
The gold standard for testing new medications is the randomized controlled trial. Randomization means that trial participants have an equal chance of being assigned to the different study arms. This reduces bias by making sure that the groups are as similar as possible. A controlled trial means that participants are randomly assigned to receive the experimental therapy or a comparison intervention—for example, the current standard of care or a placebo. A good study design is essential for ensuring that clinical trials provide reliable and relevant data. It is important for trials to enroll the full range of patients who will use a new therapy in the real world, including both sexes and people from diverse racial and ethnic groups. Joining a Clinical Trial Your cancer care team, support groups and advocacy organizations can be good sources of information about available trials. The National Institutes of Health’s ClinicalTrials.gov website lists open studies for all diseases and conditions. When considering a trial, learn all you can about the therapy being tested and what other options are available. Find out the frequency of study visits and whether the trial provides reimbursement for travel and other expenses. Don’t be afraid to ask
questions! Before agreeing to join, you must sign an informed consent document, but this is not a contract—you have the right to withdraw at any time for any reason. %HQHƓWV RI WULDO SDUWLFLSDWLRQ include early access to promising new therapies, care delivered by leading experts and altruism— knowing you are contributing to science and helping others. Drawbacks can include timeconsuming study visits, the need to forgo other therapies and the risk of side effects. Remember that in a randomized trial, you might not get the experimental treatment. Clinical trials of new cancer therapies can’t offer guarantees. Researchers don’t yet know how effective an experimental medication will be, and they can’t rule out unforeseen adverse events. But despite this uncertainty, trials can be a gateway to better treatment for yourself and other people facing cancer now and in the future. Q
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After surgery, combo therapy and a bout with MRSA, Matt McClain was declared NED.
When kidney cancer wreaked havoc in Matt McClain’s life, self-advocacy and a particular kind of help led him to a new, calmer normal. BY JENNIFER COOK • PHOTOGRAPHY BY ARI MICHELSON
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ATT MCCLAIN NEVER THOUGHT OF HIMSELF AS A control freak, but that was before cancer entered his life. In 2018, he and his wife, Heather, were living in Mammoth Lakes, California, where he was executive director of a local environmental nonprofit. A native Californian who was 53 at the time, Matt loved the outdoors. He’d get off work at five; afterward, he’d golf or hike in the summers and snowboard or ski in the winters. That summer, out on the links, he noticed a pain in his back and along his flanks. But he dismissed it. “I’m like, I’m in my 50s. I put on a little weight. I’m playing more golf. Of course, my back’s gonna hurt,” he recalls. In November, after the Mammoth Mountain resort opened for ski season, he went on a run, and the pain was so intense that he could barely get downhill. Alarmed, he visited his doctor, who ordered lab tests. “He called me back and said, ‘You know, everything on the labs looks good,’” Matt says. But Matt was in the habit of tracking his lab reports, and when he downloaded the results from the patient portal and examined them, he noticed that his GFR—the glomerular filtration rate, a measure of how well the kidneys are filtering blood to remove waste and
extra water—had “really tanked” since it was last tested three months earlier. Matt pointed out the dip to his doctor, who ordered an ultrasound. The results revealed two masses in the area of his kidneys— one a suspected lipoma (a usually harmless fatty tumor), the other indeterminate. Heather’s sister, a chemotherapy nurse in Simi Valley, California, checked with her boss, a hematological oncologist, who recommended a CT scan ASAP. Given that there was a one-month wait for a scan, Heather’s sister said, “Go to the emergency room and just tell them your back hurts, and they’ll happily do one.” “So I did, and they did,” Matt says. “Afterward, I was sitting there in the ER, and the doctor came and sat down and looked at me and my wife, and he said, ‘You’ve got two masses in there. One of them is a lipoma, but the other one looks like it could be cancer.’ And I remember looking at my wife and saying, ‘Well, here we go.’”
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CancerHealth 11
YOU CAN HAVE CONTROL OVER HOW YOU REACT TO THINGS.
“YOU MAY NOT MAKE IT OFF THE TABLE” In mid-December, Matt and Heather headed down to Simi Valley, where the hematological oncologist admitted him to the hospital where Heather’s sister had privileges. At warp speed, he had another CT scan, a brain scan and a bone scan—“stuff that would have taken weeks otherwise,” he says. “I will forever be thankful for that.” Matt was diagnosed with renal cell carcinoma, the most common type of kidney cancer. The cancer had not spread to his bones or brain, but there was a tumor in his left kidney and one on his left adrenal gland. There was also a tumor thrombus (a tumor inside a blood vessel) inside his renal vein that was working its way up his inferior vena cava, a major vein that returns oxygen-depleted blood from the lower body to the heart. Because Matt’s case was complex, the Simi Valley oncologist got him in to see two top doctors at Cedars-Sinai Medical Center in Los Angeles—a urological surgeon and a transplant surgeon. The plan was for the urological surgeon to remove the left kidney and adrenal gland and then for the transplant surgeon to take out the thrombus, which had reached Matt’s diaphragm. “This is a serious surgery,” the urological surgeon told Matt and Heather at their consultation. “And I just want to be clear: There’s a chance that you may not make it off the table.” Hearing that, “we’re just losing our minds,” Matt recalls. “And then we went to see the transplant doctor, and they gave us little coffees, and he was such a charming man. He’s like, ‘Well, this is serious, but I think we can do this.’ I think his confidence and demeanor helped, but we had this mix between hope and terror.” The surgery was scheduled for January 16, 2019. The three weeks leading up to that date were especially tough and filled with anxiety. But Heather had a mantra that Matt has since adopted: one day at a time. “I think that was, for me, almost lifesaving, having someone there who was just focused on getting through each day.” The 13-hour surgery was successful. Matt spent about two days in an intensive care unit before being moved to a regular hospital room. There, he started retaining fluid, gaining 30 to 40 pounds and swelling up painfully because his right kidney had been injured during the operation. Two rounds of dialysis removed the fluid, and slowly, the
12 CancerHealth WINTER 2024 cancerhealth.com
kidney recovered. He was discharged after 11 days. The pathology report confirmed that Matt had Stage IV, Grade 4 kidney cancer. The good news was that there were no exotic features; the bad news was that the grade meant that the cells were poorly differentiated and the likelihood of recurrence was extremely high. Worse still, a “whole litany of issues” cropped up after the surgery. ONE STEP FORWARD, TWO STEPS BACK Matt recovered from the operation at his sister- and brother-in-law’s home. Everything was on track until he developed a seroma, an area around the surgery that accumulated clear fluid. When it got too big, Matt returned to the hospital in Simi Valley to have a drain put in; in the process, he contracted MRSA, a highly antibioticresistant bacterial infection. “I had to go back in the hospital for an additional 10 days while they treated this MRSA infection with IV antibiotics,” he says. Matt and Heather returned to Mammoth Lakes in early April and even went camping. Then the seroma returned, which meant another drain and more antibiotics. But the doctors at Mammoth Hospital cleared the infection. Matt thought long and hard about where he wanted to get his follow-up cancer care. While Cedars-Sinai is a great hospital, friends and physicians he spoke with mentioned the University of Southern California (USC), insisting that its reputation for urinary tract cancer was “top-notch.” He and Heather went to meet Haris Zahoor, MD, who took him on as a patient. Fears of recurrence were top of mind for Matt, but Zahoor set him at ease, saying, “We’re not gonna think that way. Right now, the chances of your getting cancer are the same as for me or anybody else. You don’t have cancer in your body. We’ll just take it scan to scan.” And that’s how Matt lived, with scans every three months for almost two years. “I was really looking forward to that anniversary because if you hit two years, the likelihood of recurrence drops a certain percentage,” Matt says. But about one month shy of the date, a scan found lesions on his liver that a biopsy confirmed to be renal cell carcinoma. In January 2021, Matt’s USC doctor—Zahoor had moved away—was able to prescribe a relatively new first-line immunotherapy and
targeted therapy combination to keep the cancer from spreading. In the midst of the COVID-19 pandemic, Matt drove to USC every six weeks for a double-dose infusion of the immunotherapy drug and a scan. “I sailed through that,” he says. But almost immediately after starting the targeted therapy, taken as daily pills, he began to lose his voice and was incredibly fatigued. Mouth sores and itchy palms followed—all manageable side effects. But then his red blood cell count climbed so high that he had to undergo frequent blood draws, removing two pints at a time because his doctors were worried that he might otherwise have a stroke or heart attack. Although his USC doctor said this wasn’t a side effect of the drug, he finally “capitulated” and took Matt off it. However, Matt’s treatment had already damaged his thyroid, and finding a dose of thyroid medication that’s neither too low nor too high is an ongoing struggle. NO EVIDENCE OF DISEASE By late 2021, none of the previous lesions on Matt’s liver could be visualized on a CT scan. He stayed on the immunotherapy drug until March 2023, when he was declared NED—no evidence of disease— and returned to active surveillance, with scans every four months. “When I tell people I’m NED, they think everything is great,” he says. “But if someone asks me how I feel, I say, ‘Honestly, it’s in some ways even more terrifying than having active cancer.’ It’s like, imagine you had a backpack on and inside was a bomb, and you didn’t know when it was going to go off—in two days, two weeks, two months, two years or never. If it goes off, you’re gonna die. And you can’t take the backpack off. You wear it every day. That’s my life right now. “I’m stoked that I’m NED. I try to live my life as fully and robustly as I can. But you know, I wear that backpack every day.” The sense of not being in control has plagued Matt throughout his cancer experience. “I would go down these multiday spirals of anxiety. It was just awful,” he recalls. “I’d wake up my wife at like four o’clock in the morning, having not slept, just online, doing these deep dives into this stuff. I knew I was not in control of my ability to handle this disease.” For help, Matt turned to a psychotherapist whom he saw weekly, then twice a month and now monthly, and his primary care provider put him on a selective serotonin reuptake inhibitor, a drug often used to manage depression. “That experience was life-changing,” he says. “It has helped me, not just with my cancer but with everything.” And he had an epiphany: “I realized that you can have stability and clarity and control over how you react to things.” A recent experience confirmed his mellower outlook. An acquaintance who had cancer died, and “instead of dwelling on it for the next week and a half and not wanting to get out of bed, I was able to process it and move on,” he says. “I try to keep that in mind for the experiences I have moving forward. Even when things seem hard, there are sometimes really good opportunities nestled in there, and you’ve just got to find those and make the most of them.” Q
HOW TO SURVIVE THE CANCER ROLLER COASTER Matt McClain is working with the QRQSURƓW ,PHUPDQ $QJHOV D RQH RQ RQH FDQFHU VXSSRUW FRPPXQLW\ DQG KH LV RQ WKH SDWLHQW FDUHJLYHU DGYLVRU\ ERDUG RI WKH .LGQH\ &DQFHU $VVRFLDWLRQ +LV WLSV FDQ KHOS QHZO\ GLDJQRVHG SHRSOH DGYRFDWH IRU WKHPVHOYHV DQG LPSURYH OLIH ZLWK DQG DIWHU FDQFHU 1. Learn about your health. ,WōV KHOS IXO WR NQRZ ZKDW D FRPSUHKHQVLYH PHWDEROLF SDQHO LV RU WKH GLIIHUHQFH EHWZHHQ UHG DQG ZKLWH EORRG FHOOV 2. Get educated about your illness. /RRN WR WKH $PHULFDQ &DQFHU 6RFLHW\ .LGQH\ &DQFHU $VVRFLDWLRQ DQG RWKHUV ŏ7KDW KHOSV DOOHYLDWH WKH IHDU DQG XQFHUWDLQW\ Ő 0DWW VD\V 3. Write down your questions. %HIRUH \RXU GRFWRUōV DSSRLQWPHQW PDNH D OLVW RI WRSLFV WR GLVFXVV 4. Remember: It’s your body, your health. 7UHDWPHQW LV D partnership EHWZHHQ \RX DQG \RXU GRFWRUV 5. Don’t obsess about statistics. :KHQ \RXōUH GLDJQRVHG \RXU ƓUVW LQFOLQDWLRQ LV WR KRS RQOLQH %XW WKH QXPEHUV DUH DW OHDVW ƓYH \HDUV ROG )RU NLGQH\ FDQFHU IRU H[DPSOH PXFK RI WKH ROGHU GDWD GRQōW WDNH LQWR DFFRXQW WKH DGYHQW RI LPPXQR WKHUDS\ 0DWW QRWHV 6. Get psychological help if you need it. )HDU ZRUU\ DQG DQ[LHW\ FDQ HDW DZD\ DW \RX *R WR &DQFHU QHW DQG VHDUFK XQGHU ŏ&RSLQJ :LWK &DQFHUŐ IRU JXLGDQFH 7. Connect with cancer groups. 7DNH DGYDQWDJH RI JURXSV DW D ORFDO KRVSLWDO RU SHHU WR SHHU FRXQVHOLQJ RUJDQL]DWLRQV OLNH ,PHUPDQ $QJHOV 8. Recognize that everyone in life has to give things up. ŏ,WōV DQ XQ IRUWXQDWH SDUW RI DJLQJ WKDW ZH KDYH WR UHOLQTXLVK FHUWDLQ DFWLYLWLHV WKDW ZH FKHULVK Ő 0DWW VD\V ŏ%XW RWKHU RSSRUWXQLWLHV ZLOO DULVHŋEH RSHQ WR WKLQJV \RXōYH QHYHU WULHG EHIRUH Ő
cancerhealth.com
WINTER 2024
CancerHealth 13
YOUR TEAM
BY ABBY SAJID
What Does a Cancer Doula Do? A discussion with Talaya Dendy, a Minneapolis-based cancer doula, board-certified patient advocate and Hodgkin lymphoma thriver how their treatment options can potentially affect their health and their quality of life. If they’re interested in learning about complementary therapies and clinical trials, I help them with that as well. The other piece is communication—with their health care provider, their employer, their family.
Which areas of the cancer journey do you focus on? I focus on health, emotional support, treatment options and communication. I typically work with individuals and families, making sure they have the emotional support they need to get to the other side of cancer. It’s very personalized.
How does the cancer doula model that you’ve created differ from the traditional patient advocate? Patient navigators or social workers at hospitals are great at what they do. But being outside of a health care facility, I have a ORW PRUH ŴH[LELOLW\ WR VXSSRUW people. I have additional resources that the traditional patient advocate may not have, a whole network of people I can reach out to. And I work with patients’ caregivers as well. Oftentimes, they are forgotten and don’t get the care they need to best support their loved ones.
How do you help improve the quality of life for people with cancer? I help people understand that they have a say in what they want their life to look like. I do this, for H[DPSOH E\ WDNLQJ WKH LQIRUPDtion that their doctor has shared with them, breaking it down in detail so that they understand it and making sure they understand
How did your experience with Hodgkin lymphoma 12 years ago lead to your work? I can’t say enough good things about my oncologist, but there were still so many gaps in my care. I wanted to take what I learned and help other people. There are a lot of people who feel unheard, unseen and pushed to the side at a time
14 CancerHealth WINTER 2024 cancerhealth.com
Talaya when their life is on Dendy fills the line. They need the gaps in to be seen, heard, cancer care. supported. They need to have their questions answered. They need someone who can provide that emotional support and help them really take care of the emotional side of cancer because it’s not just about the disease itself. There’s more to it than that.
What inspires you today to do this work? I keep hearing the same things over and over. “I didn’t know about this.” “My doctor didn’t tell me about this.” “I didn’t NQRZ ZKDW WR H[SHFW Ő 3DWLHQWV are still not getting what they need: enough information, enough support and enough resources. And having been in WKDW SRVLWLRQ P\VHOI , ƓQG LW really frustrating 12 years later to still hear that. That lets me know that there’s room for the work that I do. Q Who’s on your team? cancerhealth.com/team
COURTESY OF TALAYA DENDY/JEANNINE MARIE PHOTOGRAPHY/BLOCK PORTRAIT STUDIOS
How common are cancer coaches or cancer doulas, and what do they do? More cancer coaches are becoming available now, but it’s still fairly new. My distinction is that a doula is someone who supports another person through a major life change or VLJQLƓFDQW KHDOWK UHODWHG H[SHULHQFH 7KDWōV GHƓQLWHO\ FDQFHU in my opinion. That’s why I’ve decided to go with “doula.” As a cancer doula, I guide my clients on their cancer journey. My services are an effort to bridge the gap between the medical and emotional sides of cancer.
BY LAURA SCHMIDT
RESOURCES
Resources for African Americans $)5,&$1 $0(5,&$16 +$9( 7+( +,*+(67 &$1&(5 0257$/,7< 5$7( 29(5$// and the lowest survival rate for most cancers of any racial/ethnic group, according to “Cancer Statistics for African American/Black People 2022,” a report by American Cancer Society researchers. These disparities are largely driven by lower socioeconomic status as well as diagnoses made when cancer is advanced and harder to treat. Numerous organizations seek to improve survival rates and quality of life for Black folks by promoting preventive lifestyles, regular health screenings, support groups and increased access to care and education. Here are some prominent examples.
$ƟƫƢƜƚƧ $ƦƞƫƢƜƚƧ %ƫƞƚƬƭ &ƚƧƜƞƫ $ƥƥƢƚƧƜƞ $$%&$ aabcainc.org
AABCA raises awareness among Black women and men impacted by breast cancer through community networking and culturally VSHFLƓF UHVRXUFHV 2XWUHDFK programs help people navigate the health care system and connect with organizations that offer treatment, clinical trials and more. $ƟƫƢƜƚƧ $ƦƞƫƢƜƚƧ +ƞƚƥƭơ 3ƫƨƠƫƚƦ $$+3 aahpmontgomerycounty.org/cancer
AAHP aims to eliminate racial disparities in cancer through free preventive services that encourage Black people to lead healthy lifestyles. Staffed by a range of health care professionals, AAHP provides health and nutrition education, counseling and classes about cancer risk factors, such as diabetes and heart disease.
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resources. Patient navigators offer transportation to clinics, translation services, childcare support and more.
which is part of the U.S. cancer agency, offers data by cancer type, race/ethnicity, age and sex.
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sistersnetworkinc.org
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ecanawomen.org
Formed by a group of women who recognized the need for reproductive health care for Black people, ECANA advocates for women affected by endometrial and uterine cancer. Visit its website for research on the disease. 0ƚƥƞƜƚƫƞ malecare.org
Malecare designs free personalized men’s health programs for underserved populations, including Black men. Free booklets help you navigate treatment, racism in medicine, side effects and more. Its virtual patient navigator, Cancer Copilot, can answer questions in seconds. 1ƚƭƢƨƧƚƥ &ƚƧƜƞƫ ,ƧƬƭƢƭƮƭƞ
awcaa.org
cancer.gov
AWCAA works to reduce the burden of cancer on African immigrant women and their families through culturally sensitive
Searching for cancer rates among Black Americans? The Surveillance, Epidemiology, and End Results Program (SEER),
Celebrating 30 years, this AfricanAmerican breast cancer survivorship organization has chapters in numerous cities. Visit its website for info on awareness and fundUDLVLQJ HYHQWV ZHELQDUV ƓQDQFLDO help and much more. 7ƢƠƞƫƥƢƥƲ )ƨƮƧƝƚƭƢƨƧ tigerlilyfoundation.org
Created to educate and empower young women before, during and after cancer, Tigerlily offers resources for minorities, such as the tool kits Understanding and Addressing Medical Racism and Increasing Black and Brown Representation in Clinical Trials. =(52 3ƫƨƬƭƚƭƞ &ƚƧƜƞƫ zerocancer.org
This organization provides support and education to folks impacted by prostate cancer. Its Black Men’s Prostate Cancer Initiative offers updated data, screening resources, support groups and a podcast. Its webVLWH IHDWXUHV D FOLQLFDO WULDO ƓQGHU
Discover more resources: cancerhealth.com/resources cancerhealth.com
WINTER 2024
CancerHealth 15
GOOD STUFF
BY LAURA SCHMIDT
YOUR QUALITY OF LIFE During quiet winter months, prioritize your well-being with oncology yoga, relaxing at-home spa nights and more.
Oncology yoga stimulates the immune system, improves strength and boosts overall well-being. Yoga4Cancer is an online resource that helps people manage cancer side effects such as fatigue, anxiety and stress through beginner-friendly online yoga classes. The American Cancer Society recommends between 150 and 320 minutes of yoga per week to speed recovery or defend against cancer occurrence or recurrence. Founded by cancer survivor and celebrated yoga teacher Tari Prinster, each class is tailored to WKH VSHFLƓF QHHGV RI SHRSOH with cancer and survivors.
After award-winning author Emily Rubin (Stalina) completed treatment for breast cancer in 2010, she launched creative writing workshops for cancer patients, survivors and caregivers at Mount Sinai Hospitals and The Blavatnik Family Chelsea Medical Center in New York City. When COVID-19 emerged in March 2020, the workshops pivoted to =RRP 6SDQQLQJ ƓFWLRQ HVVD\V poetry and more, the latest collection of participants’ creative output, titled The Write Treatment Anthology Volume 2: The Pandemic Years, addresses not only cancer but also themes that resonate with us all, including connecWLRQ FRQƓQHment, family, loss and love.
Denise McCroskey founded Hello Courage after she, her mom and her sister were all diagnosed with breast cancer within three years. While undergoing chemotherapy and losing her hair, McCroskey IRXQG FRPIRUW DQG FRQƓGHQFH LQ ZHDULQJ KHDG ZUDSV Hello Courage offers dozens of chic, comfy headwear styles for men and women. 3UH WLHG VFDUYHV DQG ORXQJH FDSV WR RIIHU FRPIRUW DQG FRQƓdence to people in treatment or growing their hair back posttreatment. For colder winter months, the soft moisture-wicking fabric of (QHUJ\ %HDQLHV WR , available in a range of patterns, provides cozy warmth without inducing sweat.
People undergoing cancer treatment are in particular need of daily skin, hair and nail support, as they can experience dry skin, hair loss, weak nails and other uncomfortable V\PSWRPV :LWK QR DUWLƓFLDO FRORUV RU ŴDYRUV OLLY Undeniable Beauty vitamin gummies ($14) contain biotin, which supports healthy hair and nails; YLWDPLQV & DQG ( ZKLFK help produce collagen; and keratin, which nourishes hair and promotes growth.
/LYLQJ ZLWK and managing pain caused by cancer can take a toll. Some experts recommend baths to soothe pain and quiet restless thoughts. The Wishing You a Speedy 5HFRYHU\ JLIW ER[ FRQWDLQV HYHU\WKLQJ \RX need for spa-quality me time. Made by Pure Chakra, a sustainable lifestyle brand, the customizable box includes a soy candle, bath salts, a bath bomb, a OLYH VXFFXOHQW DQG PRUH
Find more products to make life easier: cancerhealth.com/good-stuff 16 CancerHealth WINTER 2024 cancerhealth.com
SURVEY
How often do you use complementary therapy? T Daily T Weekly T Monthly T Never Does your insurance cover any of the costs related to your complementary therapy? T Yes T No T I don’t know.
EXTRA CARE Complementary therapies can be used to help manage the symptoms of cancer and the side effects of treatment. They can also improve your quality of life. Please share your experience with complementary therapy with Cancer Health. How long have you been living with cancer? T Less than a year T 5–10 years T 1–5 years T More than 10 years T I am now cancer-free. Have you used any of these complementary therapies? (Check all that apply.) T Meditation T Acupuncture T Aromatherapy T Music or dance therapy Art therapy T T Qigong T Biofeedback T Spirituality T Cannabis T Tai chi T Herbal therapies T Traditional medicine T Labyrinth walking T Vitamins or supplements T Massage T Yoga T Other (please specify): ___________________ T I don’t use complementary therapy.
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To what extent has complementary therapy improved your physical well-being? T Extremely T Slightly Moderately T T Not at all
How much per month do you generally spend on complementary therapy? T Less than $100 T $250–$500 T $100–$250 T More than $500 Why do you use complementary therapy? T To feel less tired T To sleep better T To manage cancer symptoms and side effects T To reduce stress and anxiety T Other (please specify): ___________________ What year were you born? _ _ _ _ What is your gender? T Male T Female T Transgender T Other What is your current level of education? T Some high school T High school graduate T Some college T Bachelor’s degree or higher What is your annual income? T Less than $15,000 T $15,000–$34,999 T $35,000–$49,999 T $50,000–$74,999 T $75,000–$99,999 T $100,000 or more What is your ethnicity? (Check all that apply.) T American Indian/Alaska Native T Arab/Middle Eastern T Asian T Black/African American T Hispanic/Latino T 1DWLYH +DZDLLDQ 3DFLƓF ,VODQGHU T White T Other ___________________________
To what extent has complementary therapy What is your ZIP code? _ _ _ _ _ improved your emotional well-being? T Extremely T Slightly Scan this QR code with your smartphone to T Moderately T Not at all take this survey at cancerhealth.com/surveys. Or email a photo of your completed survey Have you discussed complementary to website@cancerhealth.com. therapy with your health care team? T Yes T No
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
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