Cancer Health Winter 2020

A SMART+STRONG PUBLICATION CANCERHEALTH.COM WINTER 2020 $3.99

TURNING THE TABLES

What Fitness Gives Me

Speak Up About Pain

An Advocate FulďŹ lls a Promise

Becoming a patient made him a better doctor and a better man

How to Thrive With Palliative Care (Really!)

Getting Help With Your Pet Care

A Breast Cancer Diary

Lung Cancer Resources Willie Underwood, MD

THE PROBLEM WITH CANCER RESEARCH THAT FOLLOWS CONVENTIONAL WISDOM IS THAT THERE’S NOTHING CONVENTIONAL ABOUT CANCER. At the Damon Runyon Cancer Research Foundation, our research focus is singular: High-risk, high-reward.

We believe that only by pursuing and investing in the most audacious and ambitious ideas, and the young scientists who have those ideas, will we achieve real and lasting victory over humankind’s deadliest enemy.

To learn more, visit damonrunyon.org

Sakiko Suzuki, MD Physician-Scientist Inflammation and Cell Death

CAN518781.pgs 11.25.2019 14:28

ESA

CONTENTS

E xclusively on

If you have chronic cancer pain, it’s time to speak up.

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 fact sheets on cancer treatment, managing side effects and more. cancerhealth.com/basics

COVER: LUKE COPPING; (HEART SPEECH BUBBLE, IV TREATMENT, TYPEWRITER AND ILLUSTRATION BACKGROUND) ISTOCK

Treatment News

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

Blogs

Check out our selection of blogs by people living with cancer, advocates, experts and the Cancer Health editors. cancerhealth.com/blogs

Cancer Health Digital Go to cancerhealth.com to view the current issue and the entire Smart + Strong digital library.

16 TURNING THE TABLES When urologist Willie Underwood got prostate cancer, it changed his life and the way he practiced medicine. BY JENNIFER L. COOK 20 THE PANCANCER PARADIGM A new approach to treating cancer anywhere in the body highlights the importance of genetic testing. BY LIZ HIGHLEYMAN 24 WHEN CANCER PAIN WON’T GO AWAY Opioid and non-opioid ways to tame it. BY ROBIN WARSHAW 28 FULFILLING A PROMISE Why Don Stranathan is a lung cancer advocate. BY ROBIN WARSHAW 3 From the Editor Get your life back!

4 Care & Treatment Immunotherapy for lung cancer | a PARP med for prostate cancer | new breast cancer guidelines | it’s not too late to quit smoking 6 Cancer Health News Acupuncture for sleep | exercise guidelines | pet care | probiotics debate | a breakthrough movie 8 Basics Treating prostate cancer 10 Voices Yolanda Brunson-Sarrabo’s fitness philosophy | Amy Berman thanks palliative care for her reindeer ride

14 Diary Emily Garnett on being a mom and wife with metastatic breast cancer 33 Your Team Oncology pharmacist Cecilia Lau helps people know their meds.

34 Warm Your Heart Products to keep you warm and comfortable wherever you are 35 Resources Support for people with lung cancer 36 Life With Cancer One couple brings sweet dulcimer music into the waiting room.

37 Reader Survey Who’s on your team?

cancerhealth.com

WINTER 2020

CancerHealth 1

Diagnosed with cancer?

Sell your life insurance policy for cash today!

American Life Fund provides cancer patients immediate financial solutions by helping to sell their life policy.

Why Sell Your Policy?

• Pay medical costs & living expenses • Immediate, tax-free cash* • 1-page application • Free consultation

Call 855-945-1210 for a FREE Consultation or Apply Online at www.AmericanLifeFund.com Disclaimer: ALF holds various broker licenses, is not a provider, and may refer policyholders to licensed life settlement and viatical providers or persons exempt from licensure. Due to life settlement regulations, ALF services are not available to residents in all states including Georgia and Florida. This content is not applicable where ALF is not permitted to engage in life settlement transactions, solicit or advertise. *This content is not intended to provide tax or legal advice.

CAN518780.pgs 11.25.2019 14:25

ESA

FROM THE EDITOR

Cancer Health TM

EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman DEPUTY EDITOR Trent Straube SENIOR EDITOR Meave Gallagher COPY CHIEF Joe Mejía ASSISTANT EDITOR Alicia Green ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Timothy Henrich, MD; Carl June, MD; Gaby Kressly; Yung S. Lie, PhD; Gilberto Lopes, MD; Peter Pitts; Hope Rugo, MD FEEDBACK Cancer Health, 212 West 35th Street, 8th Floor, New York, NY 10001, or email info@cancerhealth.com

(BARNETT) MICHAEL HALLIDAY; (ILLUSTRATION) ISTOCK

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 COORDINATORS Ivy Peterson, Caroline Rabiecki 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. 8. Copyright © 2020 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.

Get Your Life Back WHAT DO YOU WANT FROM YOUR cancer treatment plan? It may sound like a crazy question. You want your cancer to go away! Chances are, though, that you want more.

You want your life back. That’s the theme of this issue: quality of life. It begins with treatment choices. The goal isn’t just to kill the cancer but to do so while doing the least harm to your body. Drugs that target cancer anywhere in the body, usually with fewer side effects than conventional chemotherapy, are one promising approach (“The Pancancer Paradigm,” page 20). Find more Care & Treatment news on page 4 and in Prostate Basics, page 8.

“When Cancer Pain Won’t Go Away,” page 24, covers perhaps the biggest threat to quality of life. While non-opioid therapies can be effective for some people, others need and can safely use opioids, often for years.

Finding your way to the best life you can have now is a personal journey.

In “Turning the Tables,” page 16, urologist Willie Underwood, MD, uses his own prostate cancer experience to become a better man and a better doctor, rededicating himself to serving others, including reducing racial disparities. Lung cancer survivor Don Stranathan (“Fulfilling a Promise,” page 28), advocates not only for his own treatment but also to expand opportunities for others. In “A Breast Cancer Diary,” page 14, Emily Garnett confronts with honesty the obstacles

metastatic breast cancer has put in her path. Yolanda Brunson-Sarrabo (“What Fitness Gives Me,” page 10) uses fitness to “steer the beast,” while Amy Berman (“Riding With Reindeer,” page 13) credits palliative care for her adventurous life. In “Dulcimer Harmonies,” page 36, a couple, both living with cancer, play sweet melodies to help calm others as they wait for treatment.

There’s much more in these pages to help you improve your quality of life, from acupuncture for sleep (page 6) to a cream for radiation-burned skin (page 34) to learning how your oncology pharmacist (page 33) can help you use meds more effectively and with fewer side effects.

Who’s on your team? Please take our survey on page 37 and let us know!

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

cancerhealth.com

WINTER 2020 CancerHealth 3

CARE & TREATMENT

BY LIZ HIGHLEYMAN

Immunotherapy Boosts Lung Cancer Survival Long-term data show that PD-1 checkpoint inhibitors improve survival for people with advanced non-smallcell lung cancer (NSCLC), including those with the lowest PD-L1 levels.

Martin Reck, MD, PhD, of Lung Clinic Grosshansdorf in Germany, presented updated results from a Phase III trial comparing Keytruda (pembrolizumab) versus chemotherapy as a first treatment for people with advanced NSCLC with high PD-L1 levels (50% or greater).

Keytruda provided an overall survival (OS) benefit over chemotherapy, with median survival durations of 26 versus 14 months, respectively. At three years, the survival rates were 44% and 25%.

While these results are good news for people with high PD-1 levels, those account for only around 10% of advanced lung cancer patients.

But people with undetectable PD-L1 levels can benefit too. An analysis of more than 400 patients with PD-L1 negative tumors in three first-line treatment trials showed that Keytruda plus chemotherapy

reduced the risk of death by 44% compared with chemo alone.

Immunotherapy also offers a survival advantage for previously treated people, according to an analysis of patients with advanced NSCLC in two Phase III trials who received Opdivo (nivolumab) or chemotherapy.

After five years, 13% of Opdivo recipients were still alive, compared with just 3% of solo chemotherapy recipients—about a fivefold improvement.

What’s more, this advantage was seen across all patient subgroups, including those with PD-L1 negative tumors.

Although these drugs work only for a minority of people, those who do respond live considerably longer than expected with older treatments, which have a five-year survival rate of less than 5%.

Immunotherapy “has completely changed the management of lung cancer,” turning it into “a chronic disease with good quality of life” for some individuals, says Reck.

PARP MED SLOWS PROSTATE CANCER The PARP inhibitor Lynparza (olaparib)—approved for ovarian and breast cancer—also delays prostate cancer progression, a new study shows.

The Phase III PROfound trial enrolled nearly 400 men with castration-resistant metastatic prostate cancer. They were randomized to take Lynparza or one of two newer hormone therapies, Xtandi (enzalutamide) or Zytiga (abiraterone acetate).

In men with BRCA mutations

4 CancerHealth WINTER 2020 cancerhealth.com

or another faulty DNA repair gene, Lynparza reduced disease progression or death by 66%. After 12 months, 28% of Lynparza recipients were progression-free versus just 9% of Xtandi or Zytiga recipients. Men taking Lynparza were also more likely to experience tumor regression and less likely to have worsening pain. Early results suggest the PARP inhibitor may improve overall survival as well.

“Prostate cancer has lagged

behind all other common solid tumors in the use of molecularly targeted treatment, so it is very exciting that now we can personalize an individual’s treatment based on specific genomic alterations in their cancer cells,” says Maha Hussain, MD, of Robert H. Lurie Comprehensive Cancer Center.

Breast Cancer Risk Recommendations The U.S. Preventive Services Task Force (USPSTF) recently updated recommendations for women at risk for breast cancer.

Women with BRCA mutations— who have a much higher likelihood of developing breast and ovarian cancer—are advised to start screening earlier, and some may decide to take preventive medications or undergo prophylactic mastectomy or ovary removal.

The task force recommends that women with a personal or family history of BRCA-related cancers or an ancestry associated with harmful BRCA mutations

should be evaluated using a brief risk-assessment tool. If this suggests elevated risk, they should receive genetic counseling and, if indicated, a genetic test for the mutations.

However, the experts recommend against routine risk assessment, counseling and genetic testing for women without these predisposing factors.

In a separate recommendation, the task force advised that clinicians should offer preventive hormone therapy (selective estrogen receptor modulators, such as tamoxifen, or aromatase inhibitors) to women with an

ALL IMAGES: ISTOCK

IT’S NOT TOO LATE TO QUIT It’s well known that smoking cessation can prevent several types of cancer, but people who are already diagnosed can benefit too.

The International Association for the Study of Lung Cancer calls on clinicians to screen cancer patients for tobacco use and counsel smokers about the benefits of quitting. Those who still smoke should receive evidence-based cessation assistance integrated into their multidisciplinary cancer care—and insurers should cover it.

Fortunately, smoking cessation efforts can have a high success rate. A recent study by researchers at MD Anderson Cancer Center found that a comprehensive program succeeded in keeping nearly half of people with cancer off cigarettes for at least nine months.

The individually tailored program includes an hourlong in-person consultation, six to eight follow-up counseling sessions and treatment with nicotine patches or the smoking cessation medications Zyban (bupropion) or Chantix (varenicline).

“Many cancer patients wonder if quitting smoking once they already have cancer is worth it,” says study coauthor Diane Beneventi, PhD. “The truth is, quitting at the time of diagnosis increases the chance of survival by 30% to 40%. Patients also have less chance of a recurrence or secondary cancer if they quit. They will have fewer side effects, and their treatments will be more effective. Longer term, they will enjoy a better quality of life.”

elevated risk of developing breast cancer due to factors such as family history or BRCA mutations.

But these meds can cause side effects, including hot flashes and bone loss, so women who are not at increased risk should not use them.

“There are medications available that can help some women prevent breast cancer, but they are not for everyone,” says task force member Michael Barry, MD, of Harvard Medical School.

18 TO 79 The U.S. Preventive Services Task Force now recommends that all adults in this age range be screened for hepatitis C virus (HCV) at least once, regardless of risk factors. Universal HCV screening was previously recommended only for those born between 1945 and 1965. People outside this age range should also be screened if they are at risk. Early detection and prompt treatment of hepatitis C can prevent liver cancer and the need for a liver transplant.

cancerhealth.com

WINTER 2020

CancerHealth 5

NEWS

BY BOB BARNETT

GOT PAIN? CAN’T SLEEP? TRY ACUPUNCTURE Cognitive Behavioral Training for Insomnia (CBT-i), a form of brief therapy focused on modifying emotions, behaviors and thoughts related to sleep, is the most effective first-line treatment for cancer-related insomnia, explained Sheila Garland, PhD, of the University of Pennsylvania, at the recent Society for Integrative Oncology conference. The intervention should take precedence over sleep medications, which provide only short-term relief.

Acupuncture has also been shown to relieve cancer-related insomnia. In a randomized study, Garland and Jun J. Mao, MD, of Memorial Sloan Kettering Cancer Center in New York, reported that CBT-i was more effective than acupuncture, especially for mild insomnia.

Now, however, Mao has further analyzed the data and identified a subgroup of people who report more relief from acupuncture—those with chronic pain. “There’s no one-size-fitsall solution,” he said. “If you have insomnia and pain, acupuncture may be better.” (For more pain solutions, see “When Cancer Pain Won’t Go Away,” page 24.)

Moving Through Cancer “Exercise is medicine.” That’s the motto of a long-running public health campaign from the American College of Sports Medicine (ACSM). Now, the group, along with the American Cancer Society and more than a dozen other organizations, has published cancerspecific guidelines. The conclusion: Exercise should be standard treatment for people with cancer.

Exercising during and after cancer treatment, the guidelines say, is associated with improved survival for people with breast, colorectal or prostate cancer—and possibly others. Staying active also reduces symptoms of anxiety and depression and can help counter cancer-related fatigue.

But you don’t have to go it alone. A growing cadre of health professionals are trained in cancer-specific fitness. Find an individual or a group in your area through the new search tool developed by ACSM: ExerciseIsMedicine.org/cancer_exercise.php.

6 CancerHealth WINTER 2020 cancerhealth.com

A Helping Paw Our pets provide us with love, support, a routine— all vital when facing cancer treatment. But the rigors of treatment can make it difficult to keep up with the many demands of pet guardianship. That’s why CancerCare, a national nonprofit, has launched its Pet Assistance and Wellness (PAW) Program.

Currently on offer are audio and video of the workshop “Joys and Challenges of Pets in Your Home When You Have Cancer” and the free downloadable booklet Caring for Your Pets While You Have Cancer.

Future plans include financial assistance for pet-related expenses, more educational materials (addressing, for example, how to reduce infection risk if you’re immunocompromised) and counseling services.

To access the PAW workshop and booklet, visit cancercare.org/paw, or call the organization at 800-813-4673 to speak directly with an oncology social worker.

—Meave Gallagher

The role of probiotics for people being treated for cancer was a hot topic at the recent Society for Integrative Oncology conference. These supplements contain microbes that help colonize the gut ecosystem known as the microbiome. But they may reduce microbiome diversity.

That diversity is a key predictor of checkpoint inhibitor immunotherapy success, explained Jennifer McQuade, MD, of MD Anderson Cancer Center in Houston. As previously reported in Cancer Health, patients who take probiotics are less likely to respond to immunotherapy.

To promote microbiome diversity, Johanna W. Lampe, PhD, of the Fred Hutchinson Cancer Research Center in Seattle, suggests eating a varied high-fiber diet that includes whole grains,

vegetables (including cruciferous vegetables, carrots and onions), fruit (including berries), healthy fats from nuts and seeds, some fermented foods (such as yogurt) and minimal red meat and processed foods. “For most people, feeding your own microbes with these foods is a better idea than probiotic supplements,” she said.

However, if you are not a candidate for immunotherapy, under certain circumstances taking probiotics on a short-term basis before treatment may reduce side effects. Charlotte Gyllenhaal, PhD, of the Block Center for Integrative Cancer Treatment in Skokie, Illinois, reports that studies show probiotics substantially reduced infection rates after colon cancer surgery and diarrhea after radiation treatment for cervical cancer.

JIM ALLISON: BREAKTHROUGH: COURTESY OF UNCOMMON PRODUCTIONS: ALL OTHER IMAGES: ISTOCK

JIM ALLISON: BREAKTHROUGH It’s not easy to make an edge-ofyour-seat film about scientific advances. But the new documentary Jim Allison: Breakthrough does a pretty amazing job. It chronicles the pioneering researcher whose work helped create checkpoint inhibitor immunotherapy, which unleashes the immune system against cancer, and won him a Nobel prize, shared with Tasuku Honjo, MD, PhD, in 2018.

The film shows Allison, white hair framing his craggy face, sipping whiskey and playing blues harmonica. No scientist stereotype, he goes his own way, ignoring ideas that don’t make sense to him. In 1987, French researchers discovered CTLA-4, Get more cancer news: cancerhealth.com/news

a receptor on T cells. At the time, everyone thought the receptor turned on immune function. But to Allison, that just didn’t add up.

He ignored the published literature and discovered that CTLA-4 wasn’t a pedal—it was a brake.

The insight helped open the door to checkpoint inhibitor immunology—although it took many more years of struggle to overcome scientific, commercial and bureaucratic obstacles.

Along the way, we watch Sharon Belvin, diagnosed with metastatic melanoma at age 22, as every treatment fails her until an experimental drug based on Allison’s work saves her life.

The movie, directed by Bill Haney and narrated by Woody

Harrelson, can’t tell the story of all the scientists involved in the immunotherapy revolution. It also implies that this is “the” cure—and it is, but only for a minority of people with cancer.

Still, by the time Allison—who lost his mother to lymphoma, his brother to prostate cancer and who now has prostate cancer himself—plays harmonica onstage with Willie Nelson, the movie feels like a human triumph.

It’s now in limited theatrical release (Breakthroughdoc.com) and available for streaming on iTunes.

cancerhealth.com

WINTER 2020

CancerHealth 7

BASICS

BY LIZ HIGHLEYMAN

Prostate Cancer Treatment PROSTATE CANCER DEVELOPS when cells of the prostate gland, a walnut-sized organ located under the bladder, grow out of control. It often progresses slowly and doesn’t lead to complications, but some men have aggressive tumors that require prompt treatment. Fortunately, recent research has led to new therapies that can slow disease progression, extend survival and improve quality of life.

Treatment depends on how advanced the cancer is when detected and whether it has spread elsewhere in the body, a process known as metastasis.

If a man’s prostate-specific antigen (PSA) level is elevated or a digital rectal exam detects a lump, the next steps are an ultrasound scan and a biopsy to see whether a growth is malignant.

The Gleason score, indicating how abnormal a tissue sample looks under a microscope, is used to predict how aggressive the cancer is. African-American men tend to have more aggressive disease (see “Turning the Tables,” page 16).

Men at low risk for progression may opt for active surveillance, meaning treatment is deferred and the cancer is closely monitored with frequent PSA blood tests, digital rectal exams and repeat biopsies.

If the cancer has not spread, surgery to remove the prostate and nearby lymph nodes is often

8 CancerHealth WINTER 2020 cancerhealth.com

recommended.

Less invasive robotic or laparoscopic techniques can reduce pain and bleeding.

Radiation therapy may be used to kill residual cancer cells that remain after surgery or to shrink tumors that can’t be removed.

Complications from surgery and radiation may include urinary incontinence and erectile dysfunction. But not all men experience these side effects, and they may improve over time.

Prostate cancer treatment may involve chemotherapy and other medications, either after surgery to reduce the risk of recurrence (adjuvant therapy) or to control more advanced cancer that can’t be removed.

Testosterone and other male hormones stimulate prostate cancer growth. Androgen deprivation therapy dramatically reduces testosterone production.

If the cancer continues to grow despite low testosterone (known as being castration-resistant), other types of androgen-blocking medications may be used, such as new androgen receptor inhibitors. Side effects of hormone therapy may include hot flashes, reduced sexual desire and thinning bones.

Targeted therapies work

against cancers with specific characteristics. For example, they may interfere with proteins involved in cell growth or DNA repair. Medications known as PARP inhibitors have shown promise in recent studies.

Immunotherapy helps the immune system fight cancer.

Sipuleucel-T, a personalized prostate cancer vaccine, involves removing a sample of T cells and training them to attack an individual’s cancer cells. Checkpoint inhibitors can restore T cells’ ability to recognize and destroy cancer. These medications are not very effective against prostate cancer on their own, but combination approaches look more promising.

Treatment for prostate cancer has evolved rapidly in recent years, and a number of new medications—and entirely novel approaches—are under development. Ask your doctor whether a clinical trial might be a good option for you. ■ Learn more cancer basics: cancerhealth.com/basics

ISTOCK

Newly available therapies can delay disease progression and improve survival.

RHA489774.indd 1

4/20/18 12:45 PM

CAN15703-00_HouseAd.pgs 12.20.2017 13:18

VOICES

BY YOLANDA BRUNSON-SARRABO

What Fitness Gives Me I WAS DIAGNOSED with smoldering myeloma 11 years ago.

I’m now in my 40s. My cancer is treatable but not currently curable.

I understand all too well the adjustments needed to figure out this new normal. When you have cancer, the conversation involves some deep considerations. Beyond the needles and infusions and the stress, there’s the question: How do I live the most powerful and best “me” with cancer? Is cancer a beginning or an end?

I decided to take a fitness approach. I knew that to keep a normal life and do better, even as my body was adjusting to multiple medications, I had to gain a bit of control. It’s easier said than done, but I needed to steer this beast.

When I was in treatment and felt up to it, I made it to the gym twice a week to do weight training or cardio. I was doing something positive that worked hand in hand with my treatment. I never was hard on myself when I took a break, but when I didn’t, I saw the difference.

There were days I had joint pain and swelling due to medications and myeloma. But by performing slight joint move-

Yolanda Brunson-Sarrabo trains people with cancer to get fitter.

ments, I felt better as I rebuilt my strength.

My experience seeking to comfortably work out without feeling defeated led me to become a certified fitness coach.

I work mostly with clients who have chronic conditions, including cancer. Many are scared of a fitness routine. I show them how to use exercise to reduce fatigue, improve balance, ease anxiety, boost mood, lower blood pressure, enhance circulation and manage weight.

It’s important to have a realistic conversation with your oncology team about the correct fitness path for you. Yes, things can go

10 CancerHealth WINTER 2020 cancerhealth.com

wrong if you don’t know what you’re doing. I take many meds, including steroids, which can weaken bones, and I’ve had a few lesions on my spine (fortunately, small ones), so I’m not lifting any 100-pound weights.

But my oncologist gave me the green light to lift smaller weights, with precautions.

I help my clients tailor their routines too. I help them understand that a wellstructured fitness plan helps them take control of their current situation, even when it feels uncontrollable. I help them tune in to what their bodies need—indeed, crave.

I start each day asking myself, “How do I feel today?” and “What do I want to accomplish today?” It gets me taking the right steps, doing what I need to do—even when I don’t want to be bothered. I focus on minigoals—for myself and for my clients. If I can do circuit training of arms and legs in 20 to 30 minutes, that’s a good start.

You have to use what you have to get where you need to be.

Here’s my motto: “The time to fight is now, with integrity, grace, hope and a smile…when you feel like it.” ■

COURTESY OF YOLANDA BRUNSON-SARRABO

Yolanda Brunson-Sarrabo, CPT, NASM, is the author of Another Face of Multiple Myeloma.

She works as a branding expert in the fashion industry and as a certified fitness coach.

BY AMY BERMAN

VOICES

Riding With Reindeer

COURTESY OF AMY BERMAN/ETHEL KHANIS

Amy Berman, RN, who has Stage IV breast cancer, works to improve care for older adults as a senior program officer for The John A. Hartford Foundation in New York City.

I LIVE A GREAT LIFE WITH cancer. I know I’m not alone.

But unlike some of you, I have a secret weapon that has kept me well even though I was diagnosed nine years ago with Stage IV (metastatic) inflammatory breast cancer.

Inflammatory breast cancer has the worst prognosis of all forms of breast cancer, with only an 11% to 20% five-year survival.

Yet I have never been hospitalized. I work, travel and have lots of adventures and fun. It’s not the kind of story you expect.

But it could be your story too.

My secret weapon is an extra layer of support called palliative care. I still go to my oncologist for care and treatment. But I also have a palliative care team— including a nurse practitioner, physician, social worker and chaplain—that focuses on me and my family, managing my pain and symptoms, and helping me live my best life. Research shows that people who add palliative care to their usual care feel better—and live longer.

Did I tell you that I went to the Arctic Circle to go reindeer and dog sledding last January? The reindeer were super friendly (just watch out for the antlers as they turn their heads). The slow, peaceful sledding lets you sit back and enjoy the idyllic winter wonderland. Dogsledding was the polar opposite: The huskies were ready to run. They howled For more first-person stories: cancerhealth.com/stories

with delight as they were harnessed. The snow was so deep it often covered their legs, but that made them all the more energetic and joyful.

I could never have gone on my many adventures were it not for palliative care. It helps you get through the challenges of treatment and the discomforts of the disease. It’s for people of any age, whether they have curable or chronic cancer or are facing the end of life.

My palliative care team has helped me anticipate and avoid many puddles. For example, around five years ago, the cancer spread to a new area in my spine. It hurt. Standard treatment for bone metastasis pain is 10 to 20 doses of radiation.

But my palliative care doctor told me that new research had found that one slightly larger dose was just as effective— without any nausea, burning,

Amy Berman with members of the Sami people, indigenous to northern Scandinavia

redness or loss of appetite.

It worked like a charm, turning off the pain immediately with no side effects. I was on a train to Washington, DC, the next day feeling like myself again. Plus, I had pain meds in case of a temporary flare-up and a laxative, since the meds could have caused constipation so severe it could have landed me in the ER. I never needed the medication, but the point is I had a plan.

That’s what palliative care does for me. I look forward to more work, more play and a great life ahead. I wish the same for you and your loved ones. ■ To learn more and to find a team near you, check out the Center to Advance Palliative Care: www.getpalliativecare.org.

cancerhealth.com

WINTER 2020

CancerHealth 13

DIARY

AS TOLD TO CATHERINE GUTHRIE

A Breast Cancer Diary Emily Garnett, 34, is a mom, wife and lawyer turned writer and podcast host living with metastatic breast cancer in the New York City area.

In the fall of 2017, I was 32 and happily married. I was working as an elder-law attorney, and I loved my job. My husband and I had just moved from New York City to the suburbs with our toddler, Felix, and we were trying for a second child.

But since Felix’s birth, I’d been suffering from back pain. I’d seen five doctors, and each one chalked it up to being a new mom lugging around a small child. I tried physical therapy, yoga and weight loss. Nothing worked. The pain got worse.

Finally, during a physical, my primary care doctor found a lump deep in my right breast. In early November, the week Felix turned 2 and my husband and I celebrated our fifth wedding anniversary, I was diagnosed with breast cancer. I started a blog, Beyond the Pink Ribbon.

My doctors assumed they’d caught the cancer early, but the back pain gave me pause. My intuition told me to seek a second opinion.

December 2017

I sought a second opinion at one of the top cancer centers in New York, and my PET scan showed cancerous lesions on my hip, spine, rib and sternum.

My breast cancer was Stage IV, metastatic. I collapsed in my husband’s arms and cried. Because my cancer was estrogen-receptor positive, I started hormone blockers right away. A few weeks later, I added a targeted therapy, two pills a day total, to slow the disease’s progression.

August 2018 I was suffering from hot flashes, joint stiffness and fatigue—all side effects of the hormone blockers, which had put me into menopause. My doctors thought my body might adjust better to fullfledged menopause, so I had my fallopian tubes

14 CancerHealth WINTER 2020 cancerhealth.com

and ovaries removed as well as my uterus and cervix. The total hysterectomy hit me hard. I had wanted Felix to have a sibling. Instead, I refocused on being the best parent I could be.

October 2018

I began broadcasting a podcast, The Intersection of Cancer and Life. I wanted to expand on conversations I was having with friends about what it meant to be living with cancer, to help them reclaim their narratives, to demote cancer from being the plot of their lives to being a character.

November 2018

At the one-year anniversary of my diagnosis, my husband and I were really struggling. Our paradigm had shifted from two young professionals with a growing family to a metastatic breast cancer patient and caregiver and the constraints that put on our energy, our future and our family.

There were days when I couldn’t even look at my husband and my son because all I could think about was losing them. To top it off, I was also going through menopause.

My husband and I went into counseling. It was incredibly helpful. Slowly, we learned how to find our way back to sexual intimacy. I’d already lost so much to cancer, I refused to spend the rest of my life not being sexual. I wanted that level of selfcare and that level of deep connection with him.

Yes, it was awkward, and yes it was painstaking.

We had to be very deliberate and communicative.

But, in the end, we figured it out. Reclaiming sexual pleasure for myself and my marriage feels like a radical act of resistance, survival and self-love.

(GARNETT) ALLISON HOOBAN PHOTOGRAPHY; (FAMILY) KASEY LYNN PHOTOGRAPHY; (PAPER PIECES) ISTOCK

November 2017

Breast cancer ranges from Stage I to Stage IV, which is metastatic cancer that has spread elsewhere in the body. The brain, bones and liver are common sites of breast cancer metastases, or mets.

Treatment may include surgery, radiation, hormone therapy, chemotherapy and targeted therapy, which works against cancer with specific characteristics, and immunotherapy, which helps the immune system fi ght cancer.

Most breast cancer tumors carry hormone receptors. Estrogen stimulates breast cancer growth, and treatment often includes medications to block hormones. About 20% of breast cancers carry HER2 receptors and can be treated with HER2-blocking drugs. Triple-negative breast cancer doesn’t express any of these receptors and is more difficult to treat.

Left: Emily Garnett; right: Emily with her husband, Christian, and son, Felix

December 2018

My targeted therapy wasn’t working, so my doctors and I decided to switch courses of treatment.

I enrolled in a clinical trial for a drug that hadn’t come to market yet.

March 2019

I had a brain MRI that led to the discovery of two small brain lesions. I had targeted brain radiation; both lesions shrank and became inactive.

May 2019

I found out my cancer had progressed to my liver and lung. The disease was no longer responding to the hormone blockers, so I started an oral chemotherapy drug. I used skills I had learned as a competitive swimmer in high school and college: Get out of the mindset of worry, outcome and finish line. Just focus on the next step.

June 2019 My PET scan showed significant liver progression as well as bone marrow involvement. Plus, my For more first-person stories: cancerhealth.com/stories

bone mets were acting up again. My oncologist, who is usually great at giving me choices, said pointblank, “You’re starting IV chemotherapy this week.”

September 2019

Switching from oral to IV chemotherapy has been emotionally and physically draining (my hair fell out…ugh), but the stronger drug therapy was apparently what my body needed; my tumor markers have been declining. My doctor is very pleased, and, although I’m tired, I’m feeling hopeful.

I’m starting a nonprofi t to assist families with young children in which a parent was diagnosed with metastatic cancer. Every day, I try to use my experience to create positive, long-lasting benefi ts for others. As I blogged, “I only know what is true at this moment: I am here, I am alive and, despite my limitations, I am living a life that I value.”

Editor’s note: At press time, Emily’s cancer has progressed. It crossed into the fluid that bathes the nervous system and brain. She remains in treatment and continues to fight. Our thoughts are with Emily and her family during this difficult time.

cancerhealth.com

WINTER 2020

CancerHealth 15

TURNING THE TABLES A prominent urologist spent decades treating patients and researching racial disparities in prostate cancer. Then he got diagnosed with the disease himself.

That changed everything.

BY JENNIFER L. COOK PHOTOGRAPHY BY LUKE COPPING

A

RGUABLY, NO ONE KNOWS MORE ABOUT prostate cancer’s grim toll on African-American men than Buffalo-based urologist Willie Underwood III, MD, MPH. He has studied racial disparities in prostate cancer for almost two decades (see “Unequal Care,” page 19).

But Underwood’s knowledge of the subject isn’t just academic. It’s personal.

Early in 2009, at age 44, he had a routine blood test for prostate specific antigen (PSA), a marker used to detect

16 CancerHealth WINTER 2020 cancerhealth.com

Willie Underwood, MD, tells his patients, “Your whole life has changed.

Whether that’s good or bad is up to you.”

and monitor prostate cancer. His numbers had doubled, from about 1 to 2. As a urologist, Underwood knew that was a bad sign. When he opened the test results, he lifted his 1-year-old daughter from her crib—and cried. “I’m holding her, and all kinds of fear and anxiety came over me—to the point that I remember her patting me on the back,” he says.

Having cancer changed Underwood.

He has become a more empathic doctor and rededicated himself to breaking down the barriers that keep Black men from getting the best care. And he turned his life around.

A SUSPICIOUS ALL CLEAR To rule out an infection, which can spike PSA numbers, Underwood’s urologist recommended a course of antibiotics. But after finishing them, his PSA was still high, so he had a biopsy. It was negative, so he didn’t ask for the report.

Fast-forward two years to 2011. Underwood’s marriage was unraveling, and he was facing challenges at work.

On instinct, he obtained a copy of the biopsy report. It turned out that four out of six areas of prostate tissue had been missed. He needed another biopsy. Underwood asked a trusted urologist, a close friend, to do the honors. Again, the results were negative.

But his PSA numbers kept climbing. It was September 2012. He and his wife were separated. Even though both biopsies had been negative, he decided to get another one.

“My gut just said, Get it done,” he says. Underwood convinced his urologist to do a saturation biopsy, which involves taking multiple tissue samples from each of the prostate’s six areas.

That biopsy found cancer. It was confined to a small section of his prostate. On the Gleason grading system, which measures a cancer’s aggressiveness, it scored a 7, meaning it was intermediate. His urologist was reassuring, but Underwood was concerned. He knew that for about a third of men who have surgery after a biopsy, more cancer is found; he also knew that prostate cancer in Black men is more likely to be aggressive.

“DUDE, YOUR LIFE IS A MESS” Now distraught, Underwood called his close childhood friend Nate and ranted. Underwood lamented that he couldn’t beat cancer, that he might never see his daughter graduate or marry, that the odds were stacked against him. Stunned by his friend’s uncharacteristic doom-andgloom attitude, Nate reminded him of all the ways that he had already defied the odds, including going on to earn three advanced degrees after being raised by a single mom, ending by exclaiming, “Your whole life has been a statistical improbability!”

The words sank in.

It was a turning point.

Underwood inventoried his entire life and didn’t like what he saw. “I said to myself, Dude, the life you’re living is a mess! I decided then to be a better man. A better doctor. A better father. I couldn’t be a better husband—that was too late.”

Underwood decided to forgo active surveillance, meaning the deferral of treatment until regular testing shows disease progression. Instead, he chose bilateral nervesparing robotic surgery to remove his prostate (see “Prostate Cancer Treatment,” page 8). He didn’t need posttreatment radiation or hormone therapy.

I DECIDED TO BE A BETTER MAN. A BETTER DOCTOR. A BETTER FATHER.

18 CancerHealth WINTER 2020 cancerhealth.com

Surgery can cause erectile dysfunction, which Underwood did not experience, and urinary incontinence, which he did. As a former marathoner, he knew the value of exercise and religiously practiced the pelvic floor exercises called Kegels, which helped him recover in a matter of months, though “it felt like an eternity,” he says.

BECOMING BETTER Willie Underwood reconnected with his faith and recommitted himself to making a difference in the lives of people less fortunate than him, keeping a promise he had made to his grandfather at age 12. When he returned to work, he found that how he practiced medicine changed too.

At first, he kept his diagnosis and surgery secret. But one day, with a newly diagnosed man, “I could feel in my heart that he was in the place that I had been in,” he recalls. He asked the physician’s assistant to leave the room and shared what no one knew—that he, too, had been diagnosed with prostate cancer. “I told him how I felt in the process, and he just starts crying. Two grown men, and we’re both just sitting there crying. And then I said, ‘Let’s talk about it. Let’s forget about you making a decision [about treatment] and talk about how you feel right now. And let’s deal with that.’”

For the next year, Underwood continued these “undercover” conversations with his newly diagnosed patients. Then it dawned on him: “The most powerful thing I do in this business is share.” So he went public. He now tells patients and their partners or spouses, “I know. I know how you feel. I’ve been there. I tell them, ‘By the way, your whole life has changed, whether you want it to change or not. Whether it’s good or bad, happy or sad, that’s up to you.’”

His advice is to scoop up information, especially from men who’ve survived prostate cancer, and to make sure you get your doctor to answer all your questions—or find another doctor who will. And then? “Try not to worry, but live your life instead,” he says. “Fear doesn’t help.”

NEW LIFE Step by step, Underwood has overhauled his postdivorce, post-cancer life. He founded a biotech company to develop a blood test to improve prostate cancer detection. He is on the medical advisory board of the nonprofit organization Fans for the Cure and fields questions at minor league baseball games to promote PSA testing in underserved communities. The American Medical Association invited him to join its board of trustees. And he launched Will U Enterprises to help disadvantaged people achieve the five forms of wealth—economic, emotional, mental, spiritual and physical.

December marks the seventh year that Underwood is cancer-free. In July, he became engaged to Kadi Petridis, whom he met at a surprise 50th birthday party for a college friend. He also signed up with Locum Tenens, a “doc in a box” program, and now travels to small communities to provide short-term urological care where it’s needed. “It’s been an amazing experience for me,” he says, “because it allows me to interact with people that I normally would not have—to bring not only my clinical expertise but other things. At this point in my life, I want to have a positive impact on as many people as I can.” ■ For more survivor profiles: cancerhealth.com/magazines

UNEQUAL CARE Black men are 50% more likely to develop prostate cancer than white men, according to RESPOND, a 2018 study launched by the National Cancer Institute and the Prostate Cancer Foundation. They also get it at a younger age, and the disease tends to be more advanced when it’s found.

What’s more, Black men are twice as likely to die.

But why?

Genetics play a role. But meticulous research by Underwood and others has uncovered a more powerful force: unequal care. In one of his first studies, Underwood found that men diagnosed with the most aggressive form of the disease (and thus most likely to die) were least likely to receive treatment— but only if they were Black.

He went on to author or coauthor dozens of studies that have revealed racial disparities in the diagnosis and treatment of African Americans with prostate cancer as well as other malignancies. Black men are less likely to be screened and, when diagnosed, less likely to receive treatment. But when they are treated, they respond well. “The problem,” says Underwood, “has not been fixed.”

cancerhealth.com

WINTER 2020

CancerHealth 19

D

EBBIE RHEA,, 68,, CAUGHT HER LUNG CANCER

early, but it kept coming back after successive rounds of surgery and chemotherapy. Then she found a treatment that worked—and it wasn’t even developed for lung cancer.

Rhea’s oncologist had learned about Rozlytrek (entrectinib), an experimental drug that was showing good results for people with a variety of cancer types that share an uncommon genetic mutation. Rhea was one of the lucky ones—her cancer tested positive for the mutation, and she joined a clinical trial in August 2016.

“With each scan, we’d see a little shrinkage, and within the first year, the cancer was completely gone,” she says.

“We’re all hoping it’s going to continue to work for me.”

Three years later, this past August, Rozlytrek was approved by the Food and Drug Administration (FDA) as part of a new paradigm of cancer treatment.

Oncology medications have traditionally been developed for cancer in a specific part of the body. Medications for lung, breast, colon and other cancers have been tested in separate clinical trials and evaluated by the FDA for one indication at a time.

But that’s changing. Site-agnostic therapies—also known as tumor-agnostic or pancancer therapies—treat cancers with specific genetic characteristics regardless of where they occur in the body.

20 CancerHealth WINTER 2020 cancerhealth.com

This new approach arises from a better understanding of the molecular biology of cancer. Since the late 1990s, targeted therapies have been designed to home in on genetic characteristics that spur the growth of specific malignancies. But it’s increasingly clear that seemingly unrelated cancers in different parts of the body may share the same triggers.

“The whole idea is that tumor biology is far more important than where the cancer arises,” says Robert Doebele, MD, PhD, of the University of Colorado, one of the researchers who studied Rozlytek. “If we understand a target and find a drug that will work, we don’t have to follow the old paradigm of Phase I, II and III trials for each cancer type.”

DEVELOPMENT BY DESIGN The first drug approved as a pancancer therapy was the checkpoint inhibitor Keytruda (pembrolizumab)—and that happened by chance.

After Keytruda and a similar immunotherapy, Opdivo (nivolumab), were already approved for several different types of cancer, scientists discovered that they are particularly effective against colon tumors with high microsatellite instability (MSI-high). These cancerous cells are unable to fix DNA damage and often have many mutations. In May 2017, the FDA approved Keytruda for

New site-agnostic therapies highlight the importance of genetic testing.

ISTOCK

BY LIZ HIGHLEYMAN

MSI-high cancers anywhere in the body.

More recently, new drugs have been designed from scratch to treat cancer wherever it occurs.

The first, Vitrakvi (larotrectinib), is a TRK inhibitor that blocks proteins arising from gene fusions that act as an ignition switch for tumor growth.

Vitrakvi was tested in three basket trials—studies that include people with different cancer types that share a genetic characteristic—that together enrolled 43 adults and 12 children with 17 types of inoperable tumors. Because TRK fusions are so rare, the studies drew participants from around the world. In 2017, researchers reported that 75% of the participants experienced complete or partial tumor regression; some saw their tumors shrink enough that they could be cured with surgery. Vitrakvi was approved in November 2018.

Rozlytrek, the drug Rhea used, targets TRK fusions too, but it also works against ROS1 and ALK alterations, which are found in a small proportion of non-small-cell lung cancers.

An analysis of three trials, which together included 54 adults with 10 types of advanced cancer with TRK fusions, showed an overall response rate of 57%, with some achieving complete remission. What’s more, the drug was highly active against cancer that had spread to the brain. Another study showed that Rozlytrek led to

rapid and durable responses in children and adolescents.

RET is another promising target found in many types of cancer. In 2019, researchers reported early study results showing that the experimental drug BLU-667 shrank tumors in nearly 60% of people with advanced lung cancer, medullary thyroid cancer, pancreatic cancer and bile duct cancer with RET fusions or mutations. Another investigational RET inhibitor, selpercatinib, yielded response rates of 68% for people with previously treated lung cancer and 56% for those with thyroid cancer.

Because they attack specific mutations in cancer cells, narrowly targeted drugs like these cause less harm to normal cells than chemotherapy. They were generally well tolerated in studies, with few participants experiencing severe side effects or dropping out for this reason.

In addition to medications designed as site-agnostic therapies, next-generation sequencing—which can test for hundreds of mutations at once—has revealed that some well-known targets are present in multiple types of cancer. For instance, HER2, which occurs in about 20% of breast cancers, is also present in a smaller proportion of stomach, bladder, colorectal and other cancers.

This means targeted therapies developed for specific cancers—such as EGFR inhibitors for lung cancer or BRAF inhibitors for melanoma—may, in fact, have pancancer potential. For example, PARP inhibitors, which

cancerhealth.com

WINTER 2020

CancerHealth 21

TO TEST OR NOT TO TEST? Site-agnostic therapies offer benefits Robert for people with uncommon cancers Doebele, MD, PhD that don’t have their own clinical trials as well as for children, for whom drug development lags years behind adults.

“These approvals allow faster access for patients with unmet medical need—life-threatening cancers—for which separate development programs in each tumor type may have taken many years or decades given the rarity of these molecular abnormalities,” says Steven Lemery, MD, of the FDA’s Office of Hematology and Oncology Products.

But the new paradigm presents some challenges for researchers and regulators. Basket trials can save time and money, but it can be hard to find enough people with rare mutations to fill studies large enough to show statistically significant results.

TRK fusions, for example, are found in only around 1% of all malignancies, RET gene alterations occur in around 1% to 2% of lung cancer cases and an estimated 4% of solid tumors are MSI-high.

But researchers are hard at work searching for more common targets. One of these is KRAS, which, along with its siblings HRAS and NRAS, is altered in nearly a third of all malignancies (see “Expanding the Net to Catch More Cancer,” page 23).

A growing number of experts think most people with advanced cancer should undergo tumor genetic testing to determine whether they could benefit from new siteagnostic drugs or repurposed older targeted therapies.

“My message to patients is to ask their doctors to do the testing,” Doebele says. “Even if it’s just a 1 in 100 chance, it’s so meaningful for that patient in terms of effectiveness, tolerability and survival that I think it’s worth it.”

In the past, oncologists tested for recognized genetic

22 CancerHealth WINTER 2020 cancerhealth.com

alterations one at a time. Next-generation sequencing makes it possible to search for many mutations in a single tumor biopsy sample, and soon this may be done using blood samples. But it currently comes at a steep price—nearly $6,000, which insurance might not cover.

“Without next-generation sequencing, patients with advanced cancer are doomed to take old-style chemotherapy,” says retired oncologist, breast cancer survivor and patient advocate Elaine Schattner, MD. “If you’ve got terminal cancer and want treatment, your doctor has a responsibility to look for changes in your tumor that could inform treatment, and insurers have an obligation to pay for these diagnostic tests.”

Given its cost and the small proportion of patients who stand to benefit, widespread genetic testing remains controversial. In fact, some skeptics think the precision oncology hype is overblown.

Based on a retrospective analysis of more than 600,000 cancer patients, Vinay Prasad, MD, MPH, of Oregon Health and Science University, estimated that only 8% were eligible for existing targeted therapies. He is concerned that widespread genetic testing could encourage doctors to prescribe drugs that target specific mutations but that have not been shown to provide clinical benefits—such as longer survival—in controlled trials.

Yet the proportion of people who could potentially benefit from personalized targeted therapy is rising as new targets are discovered and new drugs are developed.

One recent study of more than 6,000 people with advanced cancer found that 23% could be matched to existing targeted medications—in many cases, drugs approved for a different type of cancer. But the proportion with potentially actionable gene alterations rose to 47% when experimental targets such as KRAS were included.

Although the percentages may still be small, siteagnostic therapies can make all the difference for those fortunate enough to have the right mutations.

“Without genetic testing, I never would have known,” Rhea says of the test showing that she was eligible for Rozlytrek. “It’s so important to have an oncologist who’s aware of drugs and trials that you could benefit from. This treatment saved my life.” ■

(RAE) COURTESY OF DEBBIE RHEA; (DOEBELE) COURTESY OF THE UNIVERSITY OF COLORADO

are approved for BRCA-related breast and ovarian cancer, have shown promise for treating prostate cancer and perhaps Debbie lung cancer as well.

Rhea But the pancancer principle is not universally applicable. In some cases, cancers with the same mutations in different parts of the body respond very differently to targeted therapies, and researchers do not fully understand why.

WHAT WILL IT TAKE TO MAKE pancancer therapies available for a wider group of people with cancer?

According to Piro Lito, MD, PhD, of Memorial Sloan Kettering Cancer Center, a recipient of a Damon Runyon Cancer Research Foundation Clinical Investigator Award, two advances that would make a difference are discovering targets found in more cancers and more efficient genetic testing.

One promising target for siteagnostic therapy is KRAS, one of the most commonly altered genes in people with cancer. This gene makes a protein that is part of a signaling pathway that regulates cell growth. Gene mutations produce abnormal proteins that allow cancer cells to grow out of control.

“KRAS is a cancer-causing protein that is activated in nearly a third of cancer patients,” Lito says.

“Once activated, KRAS drives uncontrolled cell proliferation leading to tumor formation,” he explains. “There are several different mutated forms and their prevalence varies between cancer types. For example, KRAS G12C is the most

COURTESY OF DAMON RUNYON CANCER RESEARCH FOUNDATION

Piro Lito, MD, PhD

frequent KRAS mutation in lung cancer (about 13% of patients), whereas KRAS G12D is most frequent in pancreatic cancer (over 95% of patients).”

Scientists have been trying to target KRAS for more than three decades without success—some have even declared it undruggable. But this is changing.

“KRAS is a small globular protein and doesn’t have the typical anchoring points used to design inhibitors targeting other common cancer drivers,” Lito says. “Recent work has led to the discovery of drugs that specifically inhibit KRAS G12C. These inhibitors are now in Phase I clinical trials, and early findings show that they are well tolerated and have potentially promising activity in lung cancer patients.

These drugs do not target the normal, or unmutated, form of KRAS, so they are predicted to have low toxicity in patients.”

Researchers recently reported results from the first human clinical trial of the experimental KRAS G12C inhibitor AMG 510. Among 23 treated participants with advanced nonsmall-cell lung cancer (NSCLC) harboring this mutation, 11 experienced tumor shrinkage, 11 more had stable disease and only one had disease progression.

However, the treatment did not meet this high bar for colorectal cancer patients, among whom just one of 12 had partial remission and 10 had stable disease.

A second investigational drug targeting the same KRAS mutation, MRTX849, performed similarly. In another early study, three of six

Learn more about the latest treatments: cancerhealth.com/treatment

study participants with metastatic NSCLC but just one of four with advanced colorectal cancer saw partial tumor shrinkage. All of those without tumor regression had stable disease.

Researchers recently reported that a so-called pan-KRAS inhibitor, which blocks a switch that turns KRAS from an inactive to an active, cancer-causing state— and therefore works against multiple KRAS mutations—has entered its first clinical trial after promising laboratory and animal studies.

To take advantage of these new therapies, people must first learn whether their cancer harbors targetable mutations.

“Molecular testing of the cancer tissue is an essential part of treatment,” Lito says. “It can help identify driver alterations that are susceptible to targeted therapies and immunotherapy.”

And testing once is not enough.

“The genetic landscape of a patient’s tumor changes with time, particularly during treatment,” he continues. “As such, molecular testing ought to be repeated—for example, when a tumor progresses. This can help us understand if new actionable alterations have occurred.”

Fortunately, new blood testing technology known as liquid biopsy will make this easier.

“Advances in liquid biopsy now enable tracking of many genetic alterations during treatment,” Lito says. “In other words, common mutations, such as KRAS G12C, can even be detected in the bloodstream. This noninvasive approach requires only a simple blood draw and can be informative in monitoring response to therapy and early disease progression. However, if liquid biopsies are negative, this doesn’t necessarily mean disease is not present and more traditional testing is still required.”

cancerhealth.com

WINTER 2020

CancerHealth 23

Non-opioid treatments and complementary approaches can help, but don’t fear using opioids when they are needed.

BY ROBIN WARSHAW

(RED BACKGROUND) ISTOCK

Erika Peterson, of Rathdrum, Idaho, hated taking medicine. She was especially opposed to opioid pain medications because people can become addicted to them.

That’s why she planned to use only high-dose ibuprofen after a bilateral mastectomy for Stage II breast cancer in 2015.

She changed her mind after surgery “because the pain was so horrible,” she says. She was given an opioid for about a week until the pain lessened.

A year later, the cancer spread to her hip and spine.

Peterson used ibuprofen or acetaminophen for pain. Then the cancer metastasized further in her bones, and her pain increased. She now uses non-opioid medications most of the time but takes oxycodone, a prescribed opioid, when she needs more relief. “My pain is pretty heavy, and some days I can’t kick it,” she says.

Pain is a complex and common side effect of cancer and its treatment. It may last only a short time, until the tumor is removed and the patient heals, for example, but it can also become chronic. Chronic pain can arise from metastases (cancer spreading beyond its original site), surgical scars,

nerve damage from chemotherapy, joint pain caused by medications, radiation burns and even constipation.

About one third of cancer survivors in the United States—about 5 million people—have chronic pain on most days or every day, a 2019 study in JAMA Oncology found. For about half of these individuals, the pain is “highimpact,” which limits personal or work activities.

One reason for the rising numbers is, ironically, treatment success—many people with cancer now live much longer than they would have 10 or 20 years ago. “It’s great to get extra time in your life, but it means you have to manage your pain for longer,” says Marcin Chwistek, MD, director of the pain and palliative care program at Fox Chase Cancer Center in Philadelphia. “Pain becomes part of the whole experience of having cancer.”

Pain is often undertreated. More than a quarter of cancer patients receive substandard care for their pain, research shows, often because of a lack of insurance.

Complicating the picture, our national battle against opioid addiction has unduly restricted access to opioid

cancerhealth.com

WINTER 2020

CancerHealth 25

WHEN OPIOIDS ARE NEEDED Opioid pain relievers, such as morphine and oxycodone, have long been a cornerstone of treatment for moderate to severe cancer pain. “Doctors prescribed them without a great deal of worry,” says Diane M. Novy, PhD, a psychologist in the department of pain medicine at the University of Texas MD Anderson Cancer Center in Houston. There once was a mistaken belief that patients taking opioids for cancer pain couldn’t become addicted.

They can. But addiction is chiefly a risk for people with cancer who already have had a substance use disorder or those who take them for non-pain reasons, such as anxiety.

Experts also stress that there is a key distinction between physical dependence and addiction. Physical dependence on opioids starts after a week or two of use; to stop taking

26 CancerHealth WINTER 2020 cancerhealth.com

them, you’ll need to be weaned off or you’ll experience withdrawal symptoms. “That happens to everyone, and it’s not addiction,” explains Chwistek. Addiction is a more complex disease, he says, “when you really lose control over the medicines.”

Some people with chronic cancer pain need to use opioids for long periods of time, and this can be done safely. Just ask Heather Von St. James, of Roseville, Minnesota. She underwent extensive surgery for malignant mesothelioma in 2006 that removed her left lung, the lining of her right lung and heart, half of her diaphragm and a rib. While in the intensive care unit, she was on morphine and then was given oxycodone for the rest of her hospitalization and recovery.

About a month later, she tried to go off the opioid but had severe pain that non-opioid medications couldn’t relieve; acetaminophen combined with an opioid helped.

Radiation followed. She was left with intense pain, “like a big steel band around my chest.” That pain persists today. Oxycodone relieves it and allows her to be active and do advocacy work for mesothelioma. Opioid medicine “doesn’t make me ditzy or loopy,” she says, noting that she’s been on the same dose for 13 years. “I have good quality of life because of it.”

Unfortunately, national efforts to overcome opioid addiction have created barriers for some people with cancer. A survey conducted for the Cancer Action Network, the advocacy arm of the American Cancer Society, reported that cancer survivors had more trouble getting opioids from pharmacies in 2018 compared with 2016.

They faced extra questions, were told the medicine was not in stock, were given only partial supplies or were denied outright.

Prescribers get warning messages from insurers when opioid prescriptions exceed recommended limits, even if appropriate. “I can almost always get the medication approved for a person with cancer. It’s just jumping through the hoops that creates a delay,” says Judith A. Paice, PhD, RN, director of the cancer pain program at Northwestern University’s Feinberg School of Medicine.

The outcry over these barriers has led the Centers for Disease Control and Prevention to clarify its guidelines. The updated version emphasizes that patients with acute or chronic pain from cancer (or sickle cell disease) should

ALL IMAGES: ISTOCK

painkillers for some people with cancer.

If you are experiencing cancer pain, especially if it’s chronic, it’s important to know that treatments and supportive approaches can bring relief and promote a better quality of life.

have access to “clinically appropriate opioid therapy.”

MANAGING PAIN WITH FEWER OPIOIDS Opioids do come with serious side effects, even for patients at low risk for addiction. “They dampen mood, the immune system, bowel motility and cognitive ability,” Novy says.

Before prescribing an opioid, clinicians these days may first advise taking non-opioid painkillers: acetaminophen; nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin and ibuprofen; antidepressants; and steroids.

Gabapentin, an anticonvulsant, can help with neuropathic and surgical pain. For some people with chronic cancer pain, according to a 2019 review study in the Journal of Clinical Oncology, non-opioid medications can be as effective as opioids.

But NSAIDs, and even acetaminophen, aren’t right for people with cancer who have some conditions or are receiving certain treatments. “We have to carefully examine the risks and benefits of every pharmacological agent when we’re developing a plan of care,” says Paice.

Medical marijuana (cannabis) may also help. There is evidence that it may relieve mild to moderate cancer pain, especially neuropathy, although scientific randomized clinical trials are lacking. “We don’t go to it as a first-line therapy because there is not enough evidence,” Chwistek says.

While cannabis is unlikely to stop severe pain, it might lessen it so people could take less opioid medication. It’s generally wise to start with a small dose, see the effects and then, if needed, slowly increase.

Interventional procedures can also be effective. Nerve blocks stop pain For more on pain relief: cancerhealth.com/pain

COMPLEMENTARY THERAPIES FOR CANCER PAIN In clinical studies, these nondrug, noninvasive approaches have been shown to help with cancer pain:

• Neurofeedback. This ap-

proach, which trains people to regulate brain waves, can reduce pain from peripheral neuropathy.

• Scrambler therapy uses electrical stimulation to reorganize pain signals. Small studies show positive results; more research is under way.

• Acupuncture, massage, meditation, mindfulnessbased stress reduction and yoga have all been shown to help with cancer-related pain.

• Staying active. When Heather Von St. James exercises and is active, she doesn’t need pain medicine as often during the day. “I think my mind is more preoccupied,” she says. She still needs medication before bed and when she wakes up.

• Cognitive behavioral therapy and other psychological therapies help people learn to pace activities, relax and challenge fearful thinking about pain, which can make it worse.

Pain psychologist Diane Novy, PhD, also encourages those with cancer pain to eat nutritious foods, follow good sleep habits and pursue activities they enjoy and find meaningful. “Having zero pain may not be realistic at all,” she says, “but there are many things you can do for yourself to make pain less severe so it won’t take up as much space in your head.”

messages from getting to the brain.

Vertebral techniques strengthen spine bones fractured by cancer. Embolization stops blood flow to reduce painful tumors. Ablation therapies using radiation remove tissues causing pain and can often result in complete pain remission (See “Riding With Reindeer,” page 13).

CREATE A PAIN MANAGEMENT PLAN The first step is to overcome any reluctance to talk with your health care providers about pain, so you can get the right medications or therapies and remove barriers to care.

Doing so will not only improve your quality of life but may also help you stick with your cancer treatment plan. Work with your oncologist as well as pain medicine or palliative care teams to develop an integrated pain management plan that works for you. Revise it as needed.

If you have pain, don’t ignore it.

Speak up—at every visit. Keep track of daily pain in a log. Record when the pain happens, where it’s located, what causes it and what it feels like—throbbing, tingling, burning, pressing, shooting or something else. Tell your doctor or nurse if pain is interfering with your quality of life, including the ability to work, enjoy personal life and take care of yourself.

Check your health insurance to see whether it covers supportive therapies.

“It’s difficult to get more than a few sessions of physical therapy, occupational therapy, psychological counseling or integrative measures like acupuncture or massage paid for,” Paice says. She would like to see that change. “In the best of all possible worlds, we would incorporate all of that into the treatment plan.” ■

cancerhealth.com

WINTER 2020

CancerHealth 27

Lung cancer advocate Don Stranathan takes on the No. 1 cancer killer.

BY ROBIN WARSHAW

AS A SURVIVOR WITH STAGE IV NON-SMALL-CELL LUNG CANCER, Don Stranathan of Santa Rosa, California, regularly participated in an online lung cancer community and responded to comments. So when a patient from New York, Penny Blume, asked for advice about nutrition, he replied.

The two continued their conversation by text message. Although they were on opposite sides of the country, they soon developed a friendship. “For the next few months, we chatted every day,” Stranathan says.

Blume, who had Stage IV small-cell lung cancer, came to visit. Their relationship grew, and they took turns flying from one coast to the other.

28 CancerHealth WINTER 2020 cancerhealth.com

FINDING ANSWERS Since then, Stranathan has experienced lung cancer progression and treatment side effects. He has been treated with radiation, chemotherapy, targeted therapy and immunotherapy, changing treatments several times as they stopped working or proved too hard to tolerate.

In January 2018, almost nine years after he was diagnosed, Stranathan began a three-drug combination regimen in a clinical trial that included a checkpoint inhibitor and two chemotherapy drugs. By April, his tumors had shrunk by 50%.

After four infusions, he stopped taking one of the chemotherapy meds. But after his 10th treatment cycle, a scan showed some minor

ANGELA DECENZO

FULFILLING A PROMISE

Stranathan was involved in lung cancer advocacy to bring attention to the need for more research and a better understanding of the disease, which causes more than 400 deaths in the United States every day. During his visits with Blume, the two attended advocacy events together, including a national conference for people with lung cancer.

With her condition worsening, Blume moved to California in October 2013. Stranathan was stable on treatment at the time and committed himself to taking care of her in his home. During her last weeks, Blume’s sister and children came to help. “We all took turns caring for Penny roundthe-clock,” Stranathan says. She was 51 when she died in January 2014.

“The last two promises I made to Penny were that I’m going to continue to advocate for lung cancer research and awareness and that I will continue to live life to the fullest,” says Stranathan, now 67 and retired.

disease progression in his hilar lymph nodes, and he added it back.

“I’m doing well,” he says. “The main side effect for me is minor fatigue, but it’s easier than chemotherapy alone.”

In 2019, while researching his next treatment options, Stranathan learned about a patient similar to him who was doing well on a checkpoint inhibitor combination, and he started this regimen as well. He is working with a cancer genomics company to identify potential future treatments based on genetic changes in his cancer over time.

Stranathan goes to spin class regularly and enjoys mountain biking, but he considers advocacy his full-time occupation. The hardest part for him is seeing young people die of lung cancer.

“That’s what motivates me to advocate,” he says. “A lot of people are getting cut short of living a full life.”

His advocacy work connects him to medical experts and patients, enabling him to learn about the latest therapies through both scientific evidence and personal reports.

He participates in medical meetings and serves as a patient adviser for lung cancer organizations, health care societies and hospitals. He is a consumer reviewer for the Department of Defense lung cancer research program and moderates several online discussion groups.

“I meet some of the top lung cancer surgeons and oncologists,” Stranathan says. On breaks during conferences and meetings, “I bug ’em for information. I question everything I can,” he adds. When the expert speaking at one event needed a ride to the airport, Stranathan immediately volunteered. “The whole time, I was asking him questions about treatment,” which the clinician readily answered, he recalls.

That information gathering helps him suggest questions for patients to ask their doctors. It also prepares him to talk with his own oncologist after the CT scans he gets every three months. “When the scan results are good, I say, ‘That’s great, but what if I had progression now?

What would you recommend based on what’s available for my next treatment option?’”

He also tells his doctor about what he has heard or read. “That way, I know that we’re both on the same page,” he says. “I always have my next plan in order.”

SPEAKING UP Stranathan wasn’t always so empowered about his own care. He had a chest X-ray back in 2006 that showed a suspicious lesion in one of his lungs. The doctors said it could be scar tissue from previous pneumonia and gave him the option to monitor it through watchful waiting.

He agreed.

“In hindsight, I wish I had known what I know now,” he says. I would have requested a needle biopsy immediately. I would have been proactive if I had known what to ask and do.” Instead, when he was finally diagnosed in 2009, the disease had spread.

Now he’s dedicated to helping other patients become better informed. He urges people not to bury their head in the sand and avoid getting answers when they have a lung problem or delay getting help for side effects because they fear being switched off of an effective therapy.

He advises those who are newly diagnosed or looking for new treatments to find out what genetic changes or mutations might be in their tumors, which can show which treatments are likely to work.

“I will not give you medical advice,” he says. “I will give you questions you need to ask your oncologist.”

Stranathan has talked with members of Congress to make the case for more funding of lung cancer research.

He works with several patient support organizations including the Lung Cancer Alliance, the Bonnie J. Addario Lung Cancer Foundation and the LUNGevity Foundation, as a member of its Survivor Advisory Council. “The community itself is your own best resource,” he tells others diagnosed with the disease.

All his advocacy efforts benefit from his years of perspective as a patient. He now sees progress beginning to take hold. Last summer, he had a party to celebrate a decade of survivorship “We’ve come a long way,” he says. “When I started doing lung cancer advocacy, most of the patients were too sick or already had their wings,” meaning they had died.

“Now I know multiple people who have over five years with Stage IV lung cancer. And I have a lot of friends who are surviving 10 to 15 years with Stage IV cancer. So there definitely is hope.” ■

I ALWAYS HAVE MY NEXT PLAN IN ORDER.

cancerhealth.com

WINTER 2020

CancerHealth 29

Got Ink? An estimated 3–5 million Americans are living with hepatitis C. Most don’t know it.

Get tested today.

THINKSTOCK (MOEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

Find out how at hepmag.com.

BY KURT ULLMAN

YOUR TEAM

Your Own Cancer Drug Expert Cecilia Lau, RPh, BCOP, APh, is a board-certified oncology pharmacist at City of Hope, a research and treatment center for cancer and diabetes in Duarte, California.

COURTESY OF CITY OF HOPE

ONCOLOGY PHARMACISTS have specialized knowledge about the medications used to fight cancer, manage complications and minimize side effects.

They work with physicians, nurses and other medical staff and directly with people in treatment.

What is an oncology pharmacist? How are you different from a regular pharmacist?

I don’t work in a traditional setting, such as a drugstore or hospital, preparing prescriptions. Instead, I work in a medical oncology clinic alongside doctors, nurse practitioners and registered nurses, and I interact directly with patients throughout their treatment.

More and more, cancer interventions are given outside of the hospital, in these outpatient facilities. You come in, see the doctor, get the treatment and then go home. It is very important that you understand how to take the medications, including supportive medications to manage side effects. That’s where I come in.

Because I am in the clinic, I am readily available to answer your questions and provide information in a timely manner. I’ll inform you about the side effects of treatment and work with you and your family to make sure you understand how to lessen adverse effects.

Who’s on your team? cancerhealth.com/team

What kinds of care do you provide?

I make sure you are educated so you have a better idea of what to expect during your treatment. For example, medications are prescribed to treat nausea that can be a side effect of chemotherapy. You will need to know how to take them, when to take them, where to get them and how to pay for them.

Just as importantly, I’ll help you understand what to do and who to call if any of your prescribed medications don’t work as expected.

Cecilia Lau, RPh, helps people in treatment better understand their medications and side effects.

What are the challenges you have in your work?

The cost of health care is a major obstacle for many. I am here to help you. For example, insurance companies may deny coverage for some medications.

And even when they pay, you may find that the co-pay or out-of-pocket portion is more than you can afford.

Part of the care I give is to advocate for the patient. I talk with various people and departments to appeal coverage denials. If you don’t have enough money to pay your share, I will

help you find and apply for financial assistance to help take away that worry.

What do you find to be the most inspiring part of your work?

The best-case scenario is when patients come back and thank me for saving their lives and helping to put them in remission. In other cases where the patient is not expected to go into remission, I hope that I contributed to prolonging a life and, more importantly, improving the quality of that life. ■

cancerhealth.com

WINTER 2020

CancerHealth 33

GOOD STUFF

BY MEAVE GALLAGHER

WARM YOUR HEART Some items to offer comfort from the winter chill

Many people in treatment for cancer feel cold even when the temperature isn’t low, so it can be harder to stay warm in the depths of winter. To help, try a Sunbeam Velvet Plush Heated Blanket ($99.95).

Wirecutter, the independent review site, selected it as the best electric blanket for its soft material, efficient heating capacity and serious safety features. Not only does the blanket offer 20 personalized settings, its warming system automatically adjusts so you stay exactly as toasty as you want to be when you use it.

CamWell’s Herb to Soothe Cream ($24.99) treats painful radiation therapy burns with an oncologist-formulated lotion that’s clinically proven to work.

It relieves painful, itchy, tender skin, promotes healing, treats and prevents inflammation, and protects against infection.

CamWell has specialized in skin care products for people undergoing cancer treatment since 2005, and the company combines Western medicine with traditional Chinese medicine to care for skin that has been damaged by radiation or chemotherapy.

Perhaps one of the most visible diseases, breast cancer is much more than the pink ribbon that symbolizes it. In Radical: The Science, Culture, and History of Breast Cancer in America ($28, Little, Brown Spark) Spark), Kate Pickert explores every aspect of the disease and its effects on women in the United States. Pickert draws on her own experience with breast cancer and interviews advocates, patients, researchers, economists and medical professionals to better understand the disease and our fight against it.

34 CancerHealth WINTER 2020 cancerhealth.com

Is chemotherapy causing painful dry mouth?

It’s important to keep your mouth environment healthy during treatment. Biotène Moisturizing Spray ($9.29) helps maintain your oral health by keeping your mouth comfortable and moist. Its alcohol-free formula won’t cause further dryness, and you can take it with you for easy use whenever dry mouth interferes with your daily activities.

Keep your feet warm, dry and protected in and out of the hospital with Woolana Hospital Boots ($41.99).

Their adjustable width allows for a good fit even with swollen feet; the vinyl soles prevent slipping; and they’re machine washable, so you can easily and safely reuse them.

Find more products to make life easier: cancerhealth.com/good-stuff

BY MEAVE GALLAGHER

RESOURCES

Lung Cancer Resources AFTER A LUNG CANCER DIAGNOSIS, YOU NEED EDUCATION, SUPPORT from peers and counselors, access to care and help with finances. Start here.

also has educational materials and a video library.

connect with support, resources and education.

Lung Cancer Caring Ambassadors Program lungcancercap.org Access free materials, including the downloadable book Lung Cancer Choices, as well as other resources meant to empower and educate people to advocate for their own best treatment.

Lung Cancer Social Media Chat lcsmchat.com Participate in Twitter discussions about lung cancer treatment, research, funding and other issues using the hashtag #LCSM. The site also has resources and transcripts of past discussions.

CancerCare cancercare.org CancerCare offers a free 15-week online support group for people in treatment for lung cancer, led by an oncology social worker.

Lung Cancer Foundation of America lcfamerica.org The Hope With Answers video series provides beginner, intermediate and in-depth levels of education to help people affected by lung cancer navigate from diagnosis to treatment and beyond.

LUNGevity Foundation lungevity.org LUNGevity’s Lung Cancer Support Community offers a social network of support to people affected by lung cancer.

Cancer Support Community cancersupportcommunity.org Find educational resources on lung cancer in English and Spanish, call the Cancer Support Helpline at 888-793-9355 or join MyLifeLine for online support.

LungCancer.org lungcancer.org Access online, phone and in-person support groups for people affected by lung cancer, including young adults, caregivers and people with metastatic disease.

GO2 Foundation for Lung Cancer go2foundation.org The GO2 Foundation coordinates in-person support groups for people with lung cancer and their caregivers in 34 states. It

Lung Cancer Research Foundation lungcancer researchfoundation.org People with lung cancer and their caregivers can call the free support line at 844-835-4325 to

American Cancer Society cancer.org Check out a library of educational resources on lung cancer, news and Stories of Hope as well as several online support communities.

ISTOCK

American Lung Association lung.org Lung Cancer Survivors, created in conjunction with the patient and caregiver platform Inspire, is an online support group with over 90,000 members.

Read about lung cancer: cancerhealth.com/lungcancer

Patient Advocate Foundation patientadvocate.org PAF has three divisions to help access case management, co-pay relief and financial aid.

Smart Patients smartpatients.com People living with lung cancer and their caregivers can join the lung cancer discussion forum, an online support group.

What Next whatnext.com Developed in part with the American Cancer Society, What Next matches patients with peers, which makes giving and receiving support easy.

cancerhealth.com

WINTER 2020

CancerHealth 35

LIFE WITH CANCER

BY GARY BRUNK

Dulcimer Harmonies

Gary and Janice Brunk, of Sapulpa, Oklahoma, fill the oncology clinic with sweet sounds.

“Music expresses that which cannot be put into words and that which cannot remain silent.”

—Victor Hugo

It selects you. You have no say in the matter, and I think that is the main reason for the fear, stress, panic and depression when you’re diagnosed.

I took my dulcimer with me into the waiting room a couple of times just to play for myself.

It always relaxes me. A number of patients came up and asked questions about the instrument.

They remarked that the music was very soothing, especially compared to the waiting room TV. I checked with management about Janice and me playing dulcimer music, even encouraging fellow patients to play their favorite musical instruments, and got the green light.

For three years, we played in the waiting room at my cancer center on Wednesdays. We don’t sing (not even in the shower). We share music, but these aren’t performances, and there are no requirements regarding talent

36 CancerHealth WINTER 2020 cancerhealth.com

Janice and Gary with their dulcimers at home

or ability. Any musical instrument qualifies, from accordion to zither. The only purpose is to share tunes to help others cope through their time of crisis, to help us learn to live each and every day with our common diagnosis.

We named our new hobby 4th Sign of the Zodiac. About a year ago, when Janice’s cancer reoccurred, I elected to change my treatment center and go to hers. She has had the same oncologist all this time, and we didn’t want to rock the boat after all the years of success.

So now we play at her treatment center from 9 a.m. to noon on various days to share music and help others to cope.

As Hans Christian Andersen once wrote, “Where words fail, music speaks.” ■ For more first-person stories: cancerhealth.com/stories

COURTESY OF JAN & GARY BRUNK

MY WIFE, JANICE, AND I HAVE been married 58 years, through good and bad times, and we have great fun with music.

It’s our primary hobby.

I bought my first mountain dulcimer at an arts and crafts fair 32 years ago when we lived in Atlanta. She spoofed me because I know nothing about music, except that I like it. Janice purchased her first hammer dulcimer 22 years ago. At one time, we formed an amateur musical group, Dulcimer Magic.

For stress relief, Jan hammers fast-action Irish jigs, while I prefer to pound out old rock ’n’ roll.

We are both cancer patients.

Janice was diagnosed with non– Hodgkin lymphoma 16 years ago and is currently going through chemo infusions again.

I was diagnosed with prostate cancer four years ago and underwent three months of daily radiation treatments and hormone therapy injections.

One day during my treatment, the CT machine malfunctioned.

While waiting for repairs, the radiologist, Andrew, mentioned he played guitar, and I fessed up to being a dulcimer player. We talked about playing together.

Going home, I kept thinking about the randomness of cancer.

SURVEY

6

TEAMWORK

7

Help can come in many different forms, and it’s important to have people on your side during cancer treatment. Cancer Health wants to know about the professional members of your team.

1

2

3

ISTOCK

4

What types of services have you used?

(Check all that apply.) ❑ Financial ❑ Physical ❑ Psychosocial ❑ Spiritual ❑ Other: _________

8

9

How are you paying for their services? ❑ Insurance ❑ Out of pocket ❑ A combination of both ❑ Other: ________ Where do you receive these services?

(Check all that apply.) ❑ Hospital ❑ Oncology clinic ❑ Online ❑ Outpatient facility Telephone ❑ ❑ Other: _________ Are you still using any of your team members’ services? ❑ Yes ❑ No (Skip to question 10.)

Why are you still using your team members’ services? ❑ I am still undergoing treatment. ❑ I still need their services. ❑ They are part of my posttreatment rehabilitation. ❑ Other: _________

My team has included (Check all that apply): ❑ Clergy ❑ Financial navigator ❑ Genetic counselor ❑ Mental health care professional ❑ Oncology nurse navigator ❑ Oncology pharmacist ❑ Oncology social worker ❑ Palliative care specialist ❑ Patient navigator ❑ Registered dietitian ❑ Rehabilitation therapist ❑ Other (please specify): _________

How did you connect with the members of your team? (Check all that apply.) ❑ Referred by another patient or support group ❑ Referred by my health insurance ❑ Referred by my oncologist ❑ Referred by my primary care physician ❑ Other: _________

12 What is your gender?

❑ Male ❑ Female

❑ Transgender ❑ Other

How helpful have you found the services of your team members? ❑ Very helpful ❑ Moderately helpful ❑ A little ❑ Not at all

5

Was it easy to access their services? ❑ Yes ❑ No

10 Why aren’t you still using your team members’ services?

❑ I cannot afford them. ❑ I no longer need them. ❑ Other: _________ 11 What year were you born? __ __ __ __

13

What is your ethnicity? (Check all that apply.) ❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ________________

14 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at cancerhealth.com/survey or mail it to: Smart + Strong, ATTN: Cancer Health Survey #8, 212 West 35th Street, 8th Floor, New York, NY 10001

Chemotherapy may destroy your cancer, but it doesn’t have to destroy your hair. “ It was a powerful experience to look healthy throughout chemotherapy and be treated as a healthy person by others. I identified as someone who was healing instead of someone who was sick.”

- Deborah Cohan, MD, San Francisco, CA

PRO 20191031-01 EN

DigniCap is FDA cleared to minimize hair loss in patients with solid tumors undergoing chemotherapy.

Learn more at dignicap.com

CAN518782.pgs 11.25.2019 14:29

ESA