Cancer Health Fall 2019

A SMART+STRONG PUBLICATION CANCERHEALTH.COM FALL 2019 $3.99

SEEKING SERENITY

How healing stories help

Betting on a Cure

10 Ways to Afford Treatment Gifts That Matter

A Man’s View of Intimacy An Ovarian Cancer Diary Acupuncture for Nausea, Pain & More

Bone Health Basics

Amanda Enayati

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

Benjamin L. Martin, PhD Innovator Cell Biology of Metastasis

David Q. Matus, PhD Innovator Cell Biology of Metastasis

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CONTENTS

E xclusively on

Cancer Health.com Cancer Health Stories Read 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

Treatment News

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

Blogs

(COVER AND THIS PAGE: ENAYATI) ARI MICHELSON; (HEART SPEECH BUBBLE, IV TREATMENT AND TYPEWRITER) ISTOCK

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.

Amanda Enayati shares her practical magic.

18 BETTING ON A CURE An inside look at how the Damon Runyon Cancer Research Foundation keeps finding breakthroughs. BY BOB BARNETT 20 FINDING POWER, SEEKING SERENITY Breast cancer survivor Amanda Enayati turned her life around by finding stories of women who beat the odds. BY CHRISTINA FRANK 24 CANCER, HANDS OFF MY BANK ACCOUNT! 10 strategies to keep costs under control. BY MIKE ROBBINS 3 From the Editor Need to know

kind of intimacy | Allison Ruddick on why politics matter to her now

4 Cancer Health News Use marijuana right | a children’s book for everyone | lymphedema myths | post-mastectomy choices

16 Diary Gaby Kressly won’t let metastatic ovarian cancer stop her next cruise.

6 Care & Treatment Insurance improves outcomes | HPV vaccine update | blood test IDs many cancers | pancancer paradigm | common cold virus treats bladder cancer | does cancer protect memory? | light therapy eases mouth sores 10 Basics Keep your bones strong.

13 Voices Clare Reed on being her own therapist | Robert Ginyard on a new

28 Your Team Acupunturist Liem Quang Le knows how to ease symptoms.

29 Resources Support for childhood cancer 30 Gifts for All Seasons Delicious free meals and more 32 Life With Cancer Avie Barron turned blue, but it was a dream come true.

33 Reader Survey How do you handle side effects?

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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 EDITORIAL INTERN Caroline Tien 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 Issue No. 7. Copyright © 2019 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.

Need to Know “EVERY DAY THE WORLD IS TEACHing me what I need to know to be in the world,” writes essayist Margaret Renkl in Late Migrations: A Natural History of Love and Loss.

When you have cancer, you need to know so many new things, including the latest therapies. Fortunately, this issue features a Q&A with the president and CEO of the Damon Runyon Cancer Research Foundation, which has been behind some of the greatest advances in cancer over nearly half a century. See “Betting on a Cure” (page 18).

In News (page 4) and Care & Treatment (page 6), you’ll learn about a novel way to harness the common cold virus, a blood test that may detect malignancies early, a new way to treat cancer anywhere in the body, light treatment for mouth sores, cannabis for pain and the best ways to prevent lymphedema, the painful swelling that can occur after breast cancer surgery. Elsewhere in the issue, educate yourself about protecting your bones (page 10) and how acupuncture eases side effects and improves quality of life (page 28).

One common “side effect” is severe financial stress. In “Cancer, Hands Off My Bank Account!” (page 24), you’ll find practical ways to protect yourself and get help. “Resources” (page 29) provides assistance for anyone whose child has cancer.

What we need to know, however, goes well beyond facts. Cancer can toss you down, and there’s no better way to learn how to get back up than

to hear the stories of fellow survivors. At her lowest ebb, breast cancer survivor Amanda Enayati, our cover subject, discovered serenity (page 20). Gaby Kressly, who has Stage IV metastatic ovarian cancer, is still going on cruises in her 80s (page 16). Clare Reed became her own therapist (page 13), Robert Ginyard reimagined sexual intimacy after prostate surgery (page 14) and Allison Ruddick discovered that for people with cancer, politics is a life-anddeath issue (page 15). Avie Barron vanquished her fears with jiujitsu (page 32).

What else might you need to know?

Perhaps new ways to reach out to friends and family for help. How about suggesting a gift they can give you to make life just a little easier? Check out “Gifts for All Seasons” (page 30).

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

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NEWS

BY BOB BARNETT

How to Use Cannabis Many people with cancer want to use cannabis (marijuana) to ease side effects but don’t know where to begin, according to palliative care expert Brooke Worster, MD, FACP, at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. Her recommendations: Start with your oncologist.

“You won’t get in trouble and won’t be judged, and it won’t interfere with your chemotherapy,” she says. If your oncologist professes not to know much, “Ask for a referral to a medical professional who has expertise in this area.”

Know what it’s best for. If you have chemotherapy-induced nausea and vomiting, especially if prescription anti-emetics are not working well, adding cannabis is low-risk and often effective.

There’s growing evidence that it works well for cancer pain too.

“It may even supplant some pain meds,” says Worster. “For example, some people need less opioid medication.”

Choose the right product.

A product that combines nonnarcotic CBD (cannabidiol) with euphoria-inducing THC (tetrahydrocannabinol) is often more effective than CBD alone. However, edibles and concentrates are easy to overdo, and smoking can impair lung health. Better choices include oils that can be vaporized (quick-acting for rapid relief) and tinctures (easy to take in small doses). For localized pain, consider topical creams and ointments.

Start low, go slow. Don’t let the salesperson in a medical marijuana dispensary load you

up. Taking too much, especially at first, can bring on dizziness (a fall risk), cognitive confusion and a racing heart. Best to start with a very small dose and slowly increase if needed.

Educate yourself. “Every state with legal medical or even recreational marijuana has a website,” says Worster. “That’s a great place to start. It’s usually run by the state’s health department, so the information will have had medical oversight.”

“A BEAR’S WISDOM” Your friend Bear might look different; she might have less hair. And that might feel scary.

Your friend Bear might feel scared, too.

But seeing you and having you near helps her feel better. And that helps you, too.

As a childhood cancer survivor, comedian and former Saturday Night Live cast member Vanessa Bayer wants to show kids how to be good friends with someone with cancer. Her advice:

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Don’t assume your friend wants to be given space or left alone. “Reach out,” she says. “If they are not up to playing or hanging out, let them tell you that.” So if you know a kid (or adult) who needs help knowing how to help, check out How Do You Care for a Very Sick Bear? (Feiwel & Friends) by Vanessa Bayer; illustrated

by Rosie Butcher.

BREAST CANCER SURVIVOR FACTS AND FICTIONS

(CANNABIS AND RIBBON) ISTOCK; (BAYER) COURTESY OF AMANDA BAYER

Lymph node removal during breast cancer surgery can lead to lymphedema—painful limb swelling that can become chronic. But much advice given to survivors isn’t backed by solid medical evidence, according to Babak Mehrara, MD, of Memorial Sloan-Kettering Cancer Center in New York City. Here’s the 4-1-1.

—Caroline Tien COMMON ADVICE

FACT OR FICTION?

Watch your weight.

Fact. Being overweight or obese doubles the risk of getting lymphedema.

Don’t lift your arms above your head.

Fiction. It’s not backed by evidence.

Take special precautions when you fly.

Fiction. No need to wear, for example, special constriction sleeves. Flying is safe.

Stay away from heat and heat treatments.

Fiction. On the contrary, some evidence indicates that heat therapy can actually reduce limb swelling.

Skip vigorous exercise.

Fiction. The opposite is true! Engage in both aerobic exercise and resistance training, which help offset symptoms regardless of whether weight loss occurs. For best results, combine with an anti-inflammatory Mediterranean diet rich in tomatoes, legumes and seafood.

22 Million

Predicted number of U.S. cancer survivors—people with a history of cancer—by the year 2030. Currently, there are 16.9 million survivors. —American Cancer Society

CHEMO HAIR TIP:

When hair grows back, it may have a different texture and color and may be curlier. Treat your new hair gently, with baby shampoo, a baby brush and a gentle conditioner. Hair often returns to its original state in six to 12 months.

Get more cancer news: cancerhealth.com/news

Post-Mastectomy Choices If you’ve had a mastectomy, you have many choices, including the option of forgoing reconstruction altogether. These resources offer the latest information, guidance and support.

ALLIANCE IN RECONSTRUCTIVE SURGERY airsfoundation.org AiRS helps women secure access to breast reconstruction after mastectomy via information about insurance, financial costs and reconstruction options. It also offers support to those who choose not to reconstruct.

FLAT & FABULOUS flatandfabulous.org Inspiring stories about women living without reconstruction, as well as advice. Another site, Flat Closure Now (flatclosurenow.org) provides a searchable list of flat-friendly surgeons.

FORCE: FACING OUR RISK OF CANCER EMPOWERED facingourrisk.org There’s a post-mastectomy photo gallery and the opportunity to connect with a volunteer peer navigator for personalized phone support.

SUSAN G. KOMEN komen.org This comprehensive website provides an overview of breast reconstruction. It includes a comparison between specific types of reconstruction—with videos.

—Kate Ferguson

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CARE & TREATMENT

BY LIZ HIGHLEYMAN

Hitting an Elusive Target

ACA LEADS TO BETTER CARE Having good health insurance leads to better outcomes for people with cancer, according to a set of studies presented at the American Society of Clinical Oncology annual meeting in June.

One study found that states that expanded their Medicaid programs under the Affordable Care Act (ACA) reduced racial differences in timely cancer treatment. Another showed that early detection and treatment of ovarian cancer increased after the ACA went into effect.

Amy Davidoff, PhD, of Yale School of Public Health, reported that Medicaid expansion led to faster treatment for eight kinds of advanced cancer. What’s more, it nearly eliminated the gap between the proportion of white people and African Americans who received treatment within 30 days after diagnosis—although in both groups, about half still weren’t treated within this window.

But Medicaid, which restricts access to certain treatments, may not be enough. Kamal Chamoun, MD, of University Hospitals Seidman Cancer Center in Cleveland, reported that multiple myeloma patients with private insurance had a 59% greater probability of survival than those covered by Medicaid.

“Cancer injustice is not a science problem. It is not a technology or a genetics problem. It is a policy problem,” says Yousuf Zafar, MD, of Duke Cancer Institute in Durham, North Carolina.

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An experimental therapy designed to target KRAS mutations showed promising activity in a small Phase I study of people with lung cancer, colon cancer and other tumors, according to a report at the American Society of Clinical Oncology annual meeting in June.

KRAS is a signaling protein that regulates cell multiplication. KRAS gene mutations are important drivers of cancer, but many experts considered this target “undruggable” after three decades of failure to find effective therapies.

Now, researchers have shown that a new drug dubbed AMG 510 shrank tumors in five out of 10 non-small-cell lung cancer patients with the targeted KRAS G12C mutation, including one person with complete remission.

In addition, 13 out of 18 people with colorectal cancer and one person with cancer of the appendix saw no disease progression.

“AMG 510 seeks to crack the KRAS code by exploiting a previously hidden groove on the protein surface” to “lock it into an inactive state,” says David Reese, MD, of Amgen, which is developing the drug.

If confirmed in larger trials, this would be good news because KRAS mutations occur more often than most currently targetable cancer mutations.

LYNPARZA SLOWS PANCREATIC CANCER The PARP inhibitor Lynparza (olaparib) delays the progression of metastatic pancreatic cancer in people with BRCA gene mutations, researchers reported at the American Society of Clinical Oncology annual meeting.

In the Phase III POLO trial, participants who were randomly assigned to take Lynparza as maintenance therapy—intended to maintain stable disease after chemotherapy—went about twice as long as placebo recipients before they experienced disease progression.

After a year on treatment, 34% of Lynparza recipients had not yet experienced disease progression, compared with 15% of placebo recipients; after two years, the corresponding figures were 22% and 10%. Two people taking Lynparza had complete remission. It is too soon to compare survival rates.

“In a disease where almost nothing works, it is truly remarkable to finally have a drug that makes such a difference, even for a small subset of patients,” says lead researcher Hedy Kindler, MD, of the University of Chicago.

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BLOOD TEST IDs CANCER A new blood test can identify many types of cancer and can even detect some malignancies—and pinpoint their location—at early stages, when they’re easier to treat.

The liquid biopsy test, from the biotechnology company GRAIL, analyzes DNA from cancer cells circulating in the blood. A study of more than 2,000 people found that the test’s sensitivity, or its ability to accurately identify cancer when present, was 76% for 12 deadly cancer types, including lung cancer, colorectal cancer, ovarian cancer and pancreatic cancer. The accuracy was 34% for Stage I cancer, 77% for Stage II, 84% for Stage III and 92% for Stage IV, or metastatic disease.

The test’s specificity, or its ability to correctly rule out cancer when not present, was 99%.

New HPV Vax Recommendation More young adults should be vaccinated against human papillomavirus (HPV), which causes cervical, anal, oral and other cancers, according to the Advisory Committee on Immunization Practices (ACIP).

Ideally, boys and girls should be vaccinated at age 11 or 12, before they become sexually active. But those who did not get the vaccine as adolescents still have a chance to catch up. ACIP now recommends the Gardasil 9 vaccine, which protects against nine types of HPV, for all women and men through age 26. The committee stopped short of recommending vaccination up to age 45, as approved by the Food and Drug Administration, but left this as a shared decision for individuals and their providers.

There’s increasing evidence that the vaccine works. A metaanalysis of 65 studies showed decreases in HPV infection and precancerous lesions since the vaccine’s introduction. Countries with high vaccination rates also saw the additional benefit of herd immunity, where even people who aren’t vaccinated themselves are protected. Over time, this should lead to a reduction in HPV-related cancers— and potentially their elimination.

CARE & TREATMENT

BY LIZ HIGHLEYMAN

PANCANCER PARADIGM In August, the Food and Drug Administration (FDA) approved Rozlytrek (entrectinib), a new site-agnostic, or “pancancer,” therapy designed to treat cancer anywhere in the body.

Rozlytrek represents a new approach to fighting cancer. It was developed to attack tumors that share specific genetic mutations regardless of where they occur in the body. It is the second medication designed to fight cancer anywhere, after Vitrakvi (larotrectinib), which was approved in November 2018.

“The whole idea is that tumor biology is far more important than where the cancer arises,” says Rozlytrek clinical trial investigator Robert Doebele, MD, PhD, of the University of Colorado.

Like Vitrakvi, Rozlytrek is a tropomyosin receptor kinase (TRK) inhibitor. TRK proteins are encoded by three neurotrophic receptor tyrosine kinase, or NTRK, genes. When one of these genes fuses with another gene, it acts as an ignition switch to spur tumor growth. In addition, Rozlytrek also targets cancers with ROS1 and ALK gene alterations, found in some non-small-cell lung cancers.

In a combined analysis of three trials, which

together included 54 adults with 10 different types of advanced cancer, Rozlytrek shrank tumors in 57% of participants, including four with complete remission. The response rate rose to 78% for those with ROS1-positive lung cancer. What’s more, over half of patients whose cancer had spread to the brain experienced tumor shrinkage.

Another study, presented at the American Society of Clinical Oncology annual meeting, showed that Rozlytrek led to “striking, rapid and durable” responses in all 12 children and adolescents who had tumors—mostly brain cancers and sarcomas— with the targeted gene alterations.

The advent of site-agnostic therapies raises the question of whether everyone with advanced cancer should receive tumor genomic testing to see whether they could benefit from new medications. TRK fusions are rare, found in only around 1% of all malignancies, but they occur more often in some uncommon types of cancer.

“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,” Doebele says.

Common Cold Virus for Bladder Cancer A virus that causes the common cold could help treat bladder cancer, according to a recent study. Hardev Pandha, PhD, of the University of Surrey in the United Kingdom, and colleagues treated 15 people with noninvasive bladder cancer using Cavatak, or coxsackievirus A21, a naturally occurring strain of the common cold virus.

One week before they underwent surgery to remove

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their tumors, the virus was inserted into the bladder via a catheter. Cavatak appears to work by infecting malignant cells and replicating inside them until they rupture and die. The virus also causes inflammation that triggers a cancer-fighting assault from the immune system.

Post-surgery analysis revealed cancer cell death in a majority of

tumors, and one person had no remaining trace of cancer.

Does Cancer Protect Against Memory Loss?

Many people living with cancer are familiar with so-called brain fog or chemo brain during treatment— but could cancer actually protect against memory problems over the longer term?

Monica Ospina-Romero, MD, of the University of California at San Francisco, and colleagues compared long-term memory changes in more than 14,500 Americans older than 70 in the Health and Retirement Study. During an average follow-up period of 12 years, about 15% were diagnosed with cancer.

People with cancer had modestly higher average memory scores than those of a similar age who did not develop cancer.

The rate of memory decline in the decade before a cancer diagnosis was about 11% slower than the decline seen in cancer-free people of a similar age. And even after diagnosis, the decline was about 4% slower.

These findings show that cancer may have a protective effect against cognitive impairment—and prior studies have indeed found that people with a history of cancer have a lower likelihood of developing Alzheimer’s disease. “These novel findings support the possibility of a common pathologic process working in opposite directions” in cancer and Alzheimer’s, the researchers suggested.

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NEW PROSTATE CANCER OPTION In July, the Food and Drug Administration approved Nubeqa (darolutamide) for prostate cancer that progresses despite a low testosterone level but that has not yet spread elsewhere in the body. Nubeqa is an androgen receptor inhibitor that interferes with the activity of male hormones in the body, including their ability to trigger prostate cancer growth.

The Phase III ARAMIS trial, which enrolled more than 1,500 men with high-risk prostate cancer, showed that Nubeqa doubled the time before cancer spread beyond the prostate (40 months versus 18 months with a placebo) and led to a 59% reduction in the risk of metastasis or death. Men in the Nubeqa group also went longer before they experienced worsening pain, developed skeletal problems (such as bone fractures) or needed to start chemotherapy.

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

Light Therapy Helps Mouth Sores Light therapy is an effective way to manage painful mouth sores, known as oral mucositis, resulting from radiation therapy and chemotherapy for head and neck cancers, according to an international group of experts.

The Multinational Association of Supportive Care in Cancer and the International Society of Oral Oncology recommend a type of low-dose laser light therapy known as photobiomodulation.

The experts reviewed more than 30 studies demonstrating the effectiveness of this method for preventing mouth sores and relieving pain.

A related study showed that two types of mouthwash, containing either doxepin (an antidepressant) or a combination of diphenhydramine (an allergy medication), lidocaine (a local anesthetic) and an antacid, significantly reduced mucositis pain in people undergoing head and neck radiation therapy.

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BASICS

BY LIZ HIGHLEYMAN

Bone Health

Even cancer that doesn’t affect the bones directly can contribute to bone problems.

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prolonged inactivity due to illness can weaken the bones.

PRESERVING BONE HEALTH Bone loss usually happens slowly, and symptoms may not occur right away. To catch problems early, experts recommend regular DEXA bone density scans and tests to measure calcium, vitamin D and bone biomarkers in the blood.

Lifestyle changes and medications can help prevent or reverse osteoporosis. Eat a healthy diet that includes foods rich in calcium. Your skin makes vitamin D when exposed to sunlight, but deficiency is common; ask your doctor whether supplements could help. Avoid smoking and limit alcohol use, which can harm the bones.

Physical activity, especially weight-bearing exercises like walking, promotes bone production. Exercises like tai chi and yoga improve strength and balance, reducing the risk of falls. At home, prevent falls by

removing clutter and installing handrails.

Bone-modifying medications, including the bisphosphonates Aredia (pamidronate) and Zometa (zoledronic acid) and the RANKL inhibitor Xgeva (denosumab), strengthen bones by inhibiting osteoclast activity. Some research suggests they may also help prevent bone metastasis.

Pain relievers, radiation therapy and chemotherapy can help control bone pain.

Don’t wait until bone problems become serious. Work with your medical team to develop a plan to prevent or manage bone complications. ■

GOOD SOURCES OF CALCIUM • Milk, cheese and yogurt • Leafy green vegetables • Soybeans and tofu

• Fish with edible bones • Almonds • Fortified breakfast cereals

Learn more cancer basics: cancerhealth.com/basics

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LIVING WITH CANCER CAN have harmful effects on bone health, leading to pain, impaired mobility and increased risk of fractures. But there are ways to prevent and manage bone problems.

Bone contains two main types of cells: osteoblasts, which build new bone, and osteoclasts, which dissolve old bone. When bone is broken down faster than it can be produced, the result is low bone mineral density, known as osteopenia or its more serious form, osteoporosis.

Cancer can tilt the balance toward bone breakdown, making bones more susceptible to fractures. This can also release excess calcium into the bloodstream, a condition known as hypercalcemia of malignancy.

Cancers that start in bones, such as osteosarcoma and chondrosarcoma, are rare in adults.

More often, cancer arises elsewhere—such as the breast, lung or prostate—and spreads to the bones, a process known as metastasis. Multiple myeloma, a blood cancer that affects the bone marrow, often leads to bone damage and fractures.

Even cancer that doesn’t affect bones directly can contribute to bone problems. Some chemotherapy and corticosteroids can harm the bones. Hormone therapy that lowers estrogen or testosterone production can cause bone loss. What’s more,

BY CLARE REED

VOICES

Changing My Mind

COURTESY OF CLARE REED

When therapist Clare Reed, of Dublin, was diagnosed with breast cancer, she used her therapeutic skills to change her own life.

AS A THERAPIST SPECIALIZING in cognitive behavioral therapy (CBT) since 2008, I help people gain control of their minds to develop actionable plans for their lives. But it wasn’t until I got cancer that I diligently used these techniques on myself. It was 2017. I was 42. The diagnosis was triple-negative breast cancer—the hardest type to treat.

Treatment included a partial mastectomy, chemotherapy and radiotherapy. Google, with its scary stats, didn’t help.

We who have experienced cancer can go down one of two cognitive paths. We can look inward and get anxious, worry, fret and feel angry, sad and depressed. Or we can choose to look outward and see, hear, view, taste and experience life for as long as we get to be on the planet. That’s the way of the pragmatist, choosing to live each day and just be.

But it’s not always easy.

The hardest part? Coping with other people’s mindsets. My friends and family were mostly in the “you can beat this” and “you are so strong; if anyone can, you can” camp.

I don’t have anything against their cheerleading style. It works for many people. But not for me.

That mental approach makes me feel like I am going to war. It kicks off adrenaline and cortisol just at the moment I need to feel calm.

For more first-person stories: cancerhealth.com/stories

I feel strongly that keeping those stress hormones at bay contributes to cancer recovery.

As a pragmatist, I have never felt at war with my body. Instead, I love my whole body, and I take the view that what will be, will be.

The truth is, a stressful lifestyle was part of my problem. I had been working so hard for over a decade—I thought I could work 12 hours a day. But every year made me more burned out. The last thing I needed was to feel more stress “fighting” my cancer.

Instead, I cut my working hours down to 10 client sessions per week.

My partner and I bought a place in the countryside, away from the city pollution. Here, I garden, growing organic, nutritious vegetables.

This move helped with my new no-alcohol lifestyle too while I give back to my body all that I took away from it over the last decade.

I’m now a CBT cancer coach (CBTforCancer.com), helping my clients achieve calm, preserve self-esteem and learn behavioral techniques to maintain a healthy lifestyle.

Clare Reed

I don’t know the outcome of my story, but I do know that I am looking after myself. I am five months into recovering from a brain operation to remove a second tumor and the accompanying radiation, and I feel great. I had a clear full-body scan recently too.

All through the treatment, my doctors were surprised at my “laid-back” attitude. I even got told off by an oncologist for “not taking my diagnosis seriously. ” I think he wanted tears and hysterics. I don’t believe he knows what a pragmatist is! ■

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VOICES

BY ROBERT GINYARD

A New Kind of Intimacy

IN 2010, AT AGE 48, I WAS diagnosed with Stage III prostate cancer. After being treated with surgery to remove the prostate gland, followed by radiation treatment and hormone therapy, I thought I would fade into obscurity and not tell anyone that I faced cancer at all.

I would never have imagined sharing my prostate cancer story—and some of my most private moments—in front of strangers across the country.

But then I got involved with the American Cancer Society in Baltimore. I gave a few talks at their events and later for the prostate cancer nonprofit ZERO (ZeroCancer.org), where I eventually become board chair.

I can’t say prostate cancer was a good thing, but I now have a new understanding of intimacy and a more positive outlook on life.

During and for a brief period after my hormone and radiation treatments, I experienced some challenging moments when it came to sharing physical moments with my wife. For those of you who might need a bit more clarity, let’s just say mission control wasn’t sending instructions for liftoff; I’ll leave it there. During this time, I began to see intimacy in a new light. It

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Robert Ginyard

was no longer about what was below my waistline but about engaging my mind to think about the totality of connection and what it means to my wife.

Before prostate cancer, my thoughts about intimacy—like those of many men I’ve talked to—were primarily focused on the physical connection. Oh, sure, I knew that intimacy involved much more than that. But it really didn’t hit home for me until the physical aspect of intimacy became, well, challenging. It was during my downtime while undergoing treatment that I connected with my wife on many

deeper levels—mentally, physically and spiritually.

I found myself observing her doing some of the most routine things, such as tilting her head slightly to put on her earrings, wrapping our daughters’ hair in ponytails or standing in front of the mirror while deciding which outfit to wear. Simple things, right?

Yet these simple things added so much to our intimate moments. Holding hands, cuddling and engaging in deep conversations were as stimulating as lovemaking. I know you’re probably saying, “Yeah, yeah, now bring on the sex.” But trust and believe me, women are often so beyond sex—they want someone who can stimulate and engage the mind as much as the body.

The fact that I am still alive to enjoy life with my wife and our daughters added to my overall happiness, which in turn made our intimate moments more meaningful. And yes, even with all this intimacy talk, my manhood remains intact. I’m still the one responsible for fixing stuff around the house (with the help of YouTube), taking out the trash and squashing centipedes that climb up the wall. The only difference is that I’ve discovered a whole new kind of strength. ■ For more first-person stories: cancerhealth.com/stories

COURTESY OF ROBERT GINYARD/BILLY MICHELS

Robert Ginyard, 57, lives in Baltimore with his wife and two children.

BY ALLISON RUDDICK

VOICES

How Cancer Changed My Politics

COURTESY OF ALLISON RUDDICK/RUSTIC WHITE PHOTOGRAPHY/ROBERT PETERSON

Allison Ruddick, diagnosed with Stage III colorectal cancer in 2014 at age 31, is the creator of the Keeping Cancer Classy blog, which appears on CancerHealth.com.

THE DAY AFTER THE 2016 election, I found myself in the ER. My heart was skipping beats, and I couldn’t breathe.

Having gone through radiation, chemotherapy and surgery over the past two years, I got scared and asked my coworker to take me to the hospital. After tests, more tests and hours of waiting, the diagnosis was… an anxiety attack.

I considered the main stressors in my life. My cancer was in remission; I was getting back into the swing of things at work; my relationship had never been better. What got me so worked up? It had to be politics. I used to be one of those people who said, “I don’t get involved in politics—it just riles people up.”

Then I got cancer.

Thankfully, I found myself living in the era of the Affordable Care Act (ACA), and my bills had been largely covered. I had an employer-sponsored plan and didn’t have to fight my insurance company every day.

But with the calls to “repeal and replace,” it dawned on me that with a series of votes, my safety net could be gone.

Before long, I was lying in bed at night going through the litany of what-ifs. What if preexisting conditions protections are repealed? What if there’s a lifetime spending cap? How could I afford scans every three months, a lifetime of maintenance chemo Read Allison’s blog: cancerhealth.com/ruddick

at $10,000 per treatment or the insulin I need to manage my chemotherapy-induced diabetes?

I’ve been told that my cancer is inoperable.

My only chance at long-term survival is constant monitoring and maintenance. In short, there’s a very real chance that without access to affordable coverage, I would die.

And I’m not alone.

So I started advocating for the ACA on social media. One stranger, who told me that paying higher premiums wasn’t worth the cost of covering me, left me in tears. But I’ve also connected with countless others in the struggle to deal with the monetary costs of cancer [see “Cancer, Hands Off My Bank Account!”, p. 24] on top of the physical, emotional and mental effects. There’s honestly more price transparency when I bring my dog to the vet than there is when I go to my oncologist. I find that fundamentally wrong.

Our current system just doesn’t help those who rely on it the most, and we need change.

So what can we do? Medicare for all? Reform the ACA? Use the market to bring down costs? I honestly don’t know the answer.

Allison Ruddick

But as we approach another presidential election year, I know how important it is to do your own research into political candidates, not just rely on social media. Take a look at the congressional roll calls and voting records.

That’s what I plan to do as the candidates release their policy proposals. I will be informed when I cast my ballot, and I want you to be too, even if you feel differently than I do. As a cancer patient, it’s extremely important to be politically aware. Your vote could mean life or death. ■

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DIARY

AS TOLD TO MEAVE GALLAGHER

An Ovarian Cancer Diary January 2016

I was offered a clinical trial of chemotherapy plus an experimental PARP inhibitor. No one told me about losing your hair and all the other side effects.

One morning, I was combing my hair, and it came out by the handful. It was quite a shock.

During the two years of the clinical trial, I stayed in remission, though my oncologist told me that I could expect to have recurrences.

cancer patients. Woman to Woman trains women to support others who are newly diagnosed. You can meet with them or talk to them on the phone or internet—it’s whatever works best for you. I had my hands full, but my oncologist insisted. There are lots of support groups out there, and I strongly recommend that people join them. You should know that you’re not alone.

I belong to three other organizations too, and they really keep me going. I’m a member of the United Way Health Impact Council, which reviews grant applications for local funding agencies. I’m on the institutional review board at Nova Southeastern University, where we review clinical applications, and I’m on the board of Fight for Sight, which supports vision research.

My background definitely had an impact on how I manage my care. I was an administrator for the University of Miami School of Medicine for many years, and I’m a real advocate for medical centers that have a teaching hospital. You’ve got your best opportunity there because they have access to clinical trials and state-of-the-art equipment that are not available to a physician in private practice.

April 2017

August 2018

My husband passed away in the hospital. Between his death and my treatment, it was rough, but I continued on with the business of everyday life and my clinical trial. I wasn’t going to give up, no matter how hard it got.

My three children and I took a riverboat cruise down the Rhine, through Switzerland, Italy and Germany.

I thought I was doing really well until a CT scan found a recurrence. I was immediately removed from the clinical trial—six weeks before it ended.

I was so disappointed.

People should advocate for themselves. You don’t have to take the doctor’s word as gospel.

I had a medical procedure for uterine fibroids and was referred to an oncologist. No cancer was detected at that time, and I went on with my life.

I was taking care of my husband, who had been diagnosed with multiple myeloma in 2015.

August 2016 I started getting pains in my lower abdomen, which I thought were because I was working too hard caring for my husband. I went back to the oncologist, who did an ultrasound and told me that I had ovarian cancer. Two weeks later, I was on the operating table to get a hysterectomy and nearby lymph glands removed. I had Stage IV metastatic high-grade ovarian cancer with no BRCA mutation.

Six weeks later, I began receiving chemotherapy.

November 2016

July 2018 My oncologist twisted my arm to join the hospital’s Woman to Woman program as a mentor to other

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(SNAPSHOTS) COURTESY OF GABY KRESSLY; (PAPER PIECES) ISTOCK

Gaby Kressly, now in her early 80s, lives in South Florida, serves on several medical review boards and is a mentor for the Woman to Woman program. She was diagnosed with ovarian cancer in 2016.

BRCA mutation—BRCA genes influence susceptibility to cancer. People with certain BRCA mutations cannot repair damaged DNA, which allows cancer cells to grow out of control.

PARP inhibitor—a type of targeted therapy that works by blocking a protein that plays a role in DNA repair.

Interfering with PARP leads to more DNA breaks, which can halt cancer cell division.

Stage IV cancer—cancer that has metastasized, or spread beyond its original location to other parts of the body.

beads and paint pictures.

Each month, I had 10 days to two weeks to chill out from the chemo and two weeks to live. I did a lot of living in that time.

December 2018

From left: Gaby Kressly outside her Florida home, 2019; in Key West, 2019; with family in Lucerne, Switzerland, 2018

My doctor and I have a lot of arguments, but we still love each other. If I don’t like what he wants to do, he’s got to convince me. I have a pad and pencil by my sofa. When something occurs to me, I write it down so I can tell him about my side effects and ask all my questions.

September 2018

I started a different chemotherapy regimen once a month for six months. It was very difficult, as the infusion was initially very strong. They made it a little less strong when I could not tolerate it well. It was four to six hours every time, but they treated me very nicely: You could get your feet massaged, and there was an art cart, so you could string For more first-person stories: cancerhealth.com/stories

My children and I met in Albuquerque, New Mexico, and we had a wonderful Christmas.

Next fall, we are planning to go on a cruise from New England into Canada to see the leaves.

March 2019

I had my last chemo treatment, followed by a CT scan, which showed that the tumor had shrunk a bit but is still there. I’m starting a new PARP inhibitor— a daily pill—and I will stay on it as long as it works.

July 2019

The PARP inhibitor has to be taken every night before bed. I did not tolerate the initial dose well— it was almost worse than chemo. The dose was cut in half, and it was much better. I still have a lot of nausea and always feel tired. However, this new drug has given me some of my life back. I can work some, and I am able to travel and do things I like. The last CT scan showed the tumor shrinking and no new invasions. ■

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BETTING ON A CURE

Yung S. Lie, PhD, is the president and CEO of the Damon Runyon Cancer Research Foundation.

BY BOB BARNETT

What excites you about going to work?

I’m the first scientist to run this organization. It’s an extraordinary and exciting opportunity to make a difference by accelerating progress in cancer research. Scientists are at the heart of everything that we do. I’m constantly inspired by them.

The foundation has an extraordinary track record, including funding scientists who have gone on to win Nobel Prizes. How do you identify revolutionary work?

It all comes down to our very rigorous selection process. We work closely with leaders in cancer research in all different fields across the country who give their time to help us identify the next generation of leaders. One of our fundamental beliefs is that we need to enable young people to take risks, be bold and pursue innovative new ideas.

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Why is supporting basic science so important?

Basic biology is at the heart of all of the treatments that we have today. Immunotherapy is a perfect example.

Yung S. Lie, PhD

How has Damon Runyon supported immunotherapy work?

One example is checkpoint inhibitors, and another is CAR-T cell therapy. In the ’70s, we supported basic research that led to identifying checkpoint pathways that help cancer cells hide from the immune system. Today’s checkpoint inhibitor drugs release the immune system to attack and kill cancer cells and, in many cases, put patients who respond into long-term remission. Still, fewer than 15% of patients respond, and for many who do, the cancer ultimately develops means to bypass them. So we’re funding research to understand how to predict who responds, develop ways to overcome resistance and increase effectiveness.

Tell us about CAR-T therapy.

This therapy involves extracting immune system T cells from a patient’s body, genetically engineering them to identify and attack cancer cells, growing them and then infusing them back into the patient.

Called a “living drug,” CAR-T cells continue to

(POKER CHIPS) ISTOCK; (LIE) COURTESY OF THE DAMON RUNYON CANCER RESEARCH FOUNDATION

THE DAMON RUNYON CANCER RESEARCH Foundation has been behind an extraordinary number of breakthroughs in the prevention, detection and treatment of cancer. It funds about 200 investigators a year—about 3,750 since it was founded in 1946. Many have been elected to the National Academy of Sciences, and 12 have been awarded Nobel Prizes. To learn about the foundation’s unique approach to developing cancer cures by supporting young scientists with what it considers “brave and bold” ideas, we spoke with its president and CEO, Yung S. Lie, PhD.

grow and patrol the body for cancer. We took a risk in funding this research nearly 15 years ago, and it turned out to be really successful—a bet well worth placing. But each therapy is created for an individual patient, so it’s extraordinarily expensive. Our scientists are working on making these therapies more specific and longer-lasting— and also on creating an off-the-shelf version, which would give many more patients access and reduce costs. And we support research on targeted therapies; for patients who have specific mutations in their tumors, these drugs can be very effective with far fewer side effects than chemotherapy.

Your scientists contributed to the human papillomavirus (HPV) vaccine, which helps prevent cervical, anal, oral, and head and neck cancers. But you also support work on vaccines for people with cancer, right?

Yes, these vaccines go into the cancer patient and into the tumor, triggering an immune response to a specific protein on the surface of a cancer cell.

We supported one cancer vaccine trial that was successful for lymphoma; now, our scientists are developing vaccines for many different cancers.

can limit unnecessary side effects—and also minimize the appropriate dose.

How can our readers take advantage of the latest research?

We’re huge advocates of encouraging patients to speak to their oncologists and patient advocacy organizations about the available clinical trials that might be appropriate for them. Modern clinical trials are now structured in such a way that patients enroll only in studies in which they have the best chance of responding.

What advice would you give to someone newly diagnosed with cancer?

Be your own advocate. Ask questions of your oncologist. We have a much better understanding of the genetic basis underlying many different cancers, so I encourage patients to have their tumors genetically profiled. It’s personalized medicine.

The goal is to apply that information to design a cocktail of existing Food and Drug Administration– approved therapies or experimental therapies that will be most effective for a very specific cancer with the fewest side effects.

Are you supporting research into the effects of lifestyle on cancer prevention and treatment?

Our researchers are working on the effects of diet and the microbiome (all the bacteria that live in a person’s gut) on susceptibility to cancer and responsiveness to treatment, on the effects of exercise, and on stress, which can contribute to the development and progression of cancer.

If you had a crystal ball, what would you predict in the next 10 years?

There are going to be improved and new targeted therapies, immunotherapies and chemotherapies that will enable precise, effective combinations of treatment for each patient. We’ve made significant progress against cancer—the cancer death rate has dropped 27% in the last 25 years—but our goal is to make all cancers treatable diseases.

What about work on minimizing side effects?

One researcher is looking at very severe side effects that some patients have with checkpoint immunotherapy. Others are working on pain, which can lead to discontinuation of treatment— and thus cancer recurrence. We’re funding research on nausea and on chemo brain. One researcher is applying genetic profiling to better understand which patients will respond to specific chemotherapies; if we can avoid giving patients drugs that their cancers are unlikely to respond to, we

We’re excited about working with the Damon Runyon Cancer Research Foundation. How do you see our collaboration unfolding?

In the months ahead, the Damon Runyon Cancer Research Foundation and Cancer Health will collaborate to bring to your audience content about the latest advances in cancer research. We’ll highlight our scientists, their innovative research—past and present—and the positive changes this work has brought to the real-life journeys of patients, families and caregivers. ■

Read the full interview and more: cancerhealth.com/damonrunyon

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Each time she learned about someone who survived, she thought, This could be me.

FINDING POWER, SEEKING Stage III breast cancer survivor Amanda Enayati turned her life around by seeking stories of women who beat the odds.

BY CHRISTINA FRANK PHOTOGRAPHY BY ARI MICHELSON

W

HEN AMANDA ENAYATI, AGE 52, WAS UNDERgoing breast cancer treatment, she had a lot of people praying for her. Her one request? “I asked them to please focus their prayers on my right boob.”

Enayati’s often irreverent sense of humor has served her well as she has navigated through a significant amount of trauma in her life. “The book of my life is a virtual encyclopedia of disaster,” she jokes.

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While life has dealt her a lot of blows, her experiences have also sparked a deep interest in the science behind stress and resilience. She turned the techniques she learned while managing treatment and recovery from breast cancer into her 2015 book, Seeking Serenity: The 10 New Rules for Health and Happiness in the Age of Anxiety. It has lessons for everyone, but particularly for anyone who is facing cancer.

those numbers again,” Enayati remembers.

That’s when she started to turn her life around.

HEALING STORIES

Feeling a desperate need for community and connection, Enayati sought out support groups but found that most of them focused on fear and grief. “That is valid, of course, but so many people’s identities became wholly about illness and not about healing. I was devastated, but I couldn’t stay in the pain. I had to defi ne myself as A ROCKY START When she was 11, Enayati and her family fled from Iran. a person beyond the cancer in order to survive.”

This switch in perspective, “reframing the narrative,” It was 1978, and it was a traumatic experience for a kid.

They lived with relatives in Europe for five years before became one of her main strategies. She sought out accounts of women with dire prognoses settling in Los Angeles in the ’80s. In 2000, she moved to who’d survived. “Every time I learned New York City. about someone who survived, I would In 2007, when she was 39, came hold that close and think, This could the diagnosis of advanced be me. I could survive.” breast cancer. Enayati was Reframing the narrative is raising a 1-year-old boy and a technique that she would a 2-year-old girl. She felt a “Narratives of survival and narratives learn later is central lump, which she assumed of healing were a real lifeline for me, to cognitive bewas a clogged milk duct and so I try to be that lifeline for others,” says havioral therapy from breast feeding.

Enayati. She can be reached through her website, (CBT), which A biopsy following a AmandaEnayati.com, and via Twitter has been shown mammogram and an (@AmandaEnayati) and Facebook to reduce deultrasound revealed (facebook.com/AmandaEnayatiAuthor). pression and that she had Stage III anxiety and imlobular breast cancer, prove quality of which develops in the life in people with milk ducts. The tumor was large (9 centimeters, or about 3 ½ inches), which is associated cancer (see “Changing My Mind,” page 13). It is available with a lower likelihood of survival; the cancer had spread at many cancer centers.

And she discovered the healing power of creativity— to her lymph nodes and chest muscle.

“I felt like the ceiling was closing in on me when I “Be creative” became rule #3. Enayati had always wanted heard that news,” she recalls. She had a right-side mas- to be a writer, but she was working as a lawyer and mantectomy as well as a significant amount of chest muscle agement consultant and had “big visions of what being a removed. “I felt like I couldn’t breathe after the surgery, ” writer was ‘supposed’ to look like.”

After her diagnosis, all that fell away. She simply she says. “You don’t realize how much we use our chest wrote, dubbing her blog Practical Magic. “Writing just muscles, even for breathing.”

An intense year of chemotherapy and radiation followed. 10 minutes each day gave me a little sense of power. It “I felt like I had no power at all,” says Enayati. “I had no was a way of surviving and staying in the world of the hair. I was so skinny, so weak, and I just looked like a living and of keeping my mind off dire possibilities.”

This, too, is backed by research. Expressive writing shriveled raisin.”

Her already low morale sank even further when an about feelings, often guided by a therapist, has been oncologist told her that only a small percentage of women shown to improve emotional health and enhance immune with her diagnosis are still alive, let alone thriving, after function in women with breast cancer.

A few months later, Enayati’s blog attracted the attention five years. “I was furious, and I told him never to say

REACHING OUT

22 CancerHealth FALL 2019 cancerhealth.com

WRITING JUST 10 MINUTES A DAY GAVE ME POWER.

of editors and agents. CNN asked her to write a column on stress, which evolved into her book.

IMPARTING HER WISDOM Enayati now travels around the country to speak about the importance of reducing stress in our lives and to offer tips—her “practical magic,” as it were. She also devotes a significant amount of time to talking one-on-one with women currently grappling with breast cancer (see “Reaching Out,” left). “I will talk to anyone who tracks me down and calls me—any and all,” she says. “I was one of the few people I knew who was in real big trouble but survived.”

Enayati doesn’t shy away from the fact that some people with cancer will fare very poorly and die. But some will also beat everyone’s expectations and go on to survive and thrive for a long time.

Again, she talks about fl ipping the narrative.

“There is no reason not to hope and expect to be part of the latter group,” she says. “I don’t believe in false hope, but I also don’t believe in false hopelessness.” ■ For more survivor profiles: cancerhealth.com/magazines

MINDFULNESS FOR PEOPLE WITH CANCER “BE PRESENT” IS RULE #10 IN Amanda Enayati’s book, Seeking Serenity: The 10 New Rules for Health and Happiness in the Age of Anxiety.

It’s the essence of mindfulness, the practice of consciously returning your attention to the present moment without judging whether you are doing it “properly” and without trying to shut out other thoughts. One evidence-based form of mindfulness training, mindfulness-based stress reduction (MBSR), has been shown to significantly reduce anxiety, depression and pain.

In recent years, an offshoot of MBSR specifically geared to cancer patients has evolved. Called mindfulness-based cancer recovery (MBCR), it’s offered at many cancer centers around the country. MBCR programs typically offer weekly meetings and daily home practice of a variety of mindfulness and yoga exercises over the course of eight weeks. The focus is on concerns common to people with cancer: loss of control, uncertainty about the future, distress, depression, anxiety and fear of recurrence, as well as symptoms such as fatigue, pain, cognitive impairment and insomnia. Both the American Society of Clinical Oncology and the Society of Integrative Oncology support mindfulness-based stress reduction in their latest guidelines for integrative therapies during and after breast cancer treatment.

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10 Strategies to Keep Costs Under Control

BY MIKE ROBBINS

ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

L

EE TOMLINSON KNEW HIS STAGE III THROAT CANCER could cost him his life. What he didn’t know is that it would cost him his home, his savings and his career.

When Tomlinson received his diagnosis in 2013, he was an award-winning TV producer. Two years later, his cancer was in remission—but his finances were on life support. Not only were tens of thousands of dollars in medical bills not covered by his health insurance, but intensive treatments left him unable to work—he could barely speak. He eventually declared bankruptcy.

“I was without income for almost a year and a half,” says Tomlinson, who remains in remission. “I’ve worked my butt off all my life, but cancer just ruined me financially.”

THE COST OF CANCER Great strides in cancer treatment in recent years have come at a steep financial cost. The average monthly price of oncology drugs more than doubled in the decade from 2006 through 2015. Some now cost more than $400,000 for a course of treatment—on top of the bills from doctors, hospitals and labs. Even if you’re covered by insurance, a growing share of this burden may land in your lap— deductibles, co-pays and co-insurance continue to rise.

What’s more, the typical person with cancer sees his or her earnings drop by almost 40% in the years following diagnosis. Between the massive costs and diminished income, 42% of patients burn through their entire life savings within two years. Studies find that costs lead some people to refuse or delay treatments—even if they are insured. Financial stress can be deadly: A 2016 study found that people diagnosed with cancer who declared bankruptcy are 80% more likely to die over the following years than those who remained solvent.

This financial toll is so devastating that the cancer community has given it a name of its own: financial toxicity. “A lot of people are blindsided by it,” says Michelle Landwehr, MPH, who is COO of The Samfund, a nonprofit that provides support to young adult cancer survivors. “Understandably, they’ve been focused on their treatment. They’re truly unprepared for the fallout in terms of finances.”

FINDING SOLUTIONS America’s health care system could protect people with cancer from financial toxicity in a number of ways. Providers could make it easier to determine prices in advance.

Drugmakers could charge less. Insurance companies could cover more—or at least make it easier to figure out

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what will and won’t be covered. “This is a pervasive problem that reflects deficiencies in our health care system and the intense nature of cancer care,” explains Veena Shankaran, MD, codirector of the Hutchinson Institute for Cancer Outcomes Research. “It is not your fault.”

But while people with cancer are not responsible for this problem, they and their families can significantly reduce the odds that a cancer diagnosis will turn into a financial disaster by using the following strategies: 1. Discuss costs with health care providers as soon as possible. “Patients should express their financial concerns to their health care team just as they would their concerns about any other side effects,” says Yousuf Zafar, MD, an oncologist and associate professor of medicine at Duke University in Durham, North Carolina. “If I know it’s a concern, there might be alternatives.” For example, oral chemotherapy drugs often have far higher out-of-pocket costs than their intravenous alternatives—even when they’re not more effective.

2. Apply for grants. Merissa Pemberton was a recent college grad just months into her first job when she was diagnosed with Stage II Hodgkin lymphoma in 2017. She paid off around 75% of her $14,000 medical debt by securing grants from nonprofit organizations.

Track down grant programs that help cancer patients by searching the websites of organizations such as the Cancer Financial Assistance Coalition, CancerCare and Cancer.Net. The Patient Advocate Foundation’s My Resource Search app can help locate additional assistance through community groups. (For the addresses of websites mentioned in this article, see “Online Help,” page 27.)

Pemberton also googled the name of her specific cancer along with other keywords related to her situation, such as “young adult.” Even if the website didn’t mention a grant program, she contacted the organization to ask what other organizations she should reach out to for financial help.

She learned to include details about her hobbies and goals in grant applications so that she would stand out from the pack. She’s now cancer-free and free of medical debt— though it wasn’t easy. “It takes a lot of perseverance,” Pemberton says.

3. Ask drug companies for deals. Most pharmaceutical companies have patient assistance programs that provide free or heavily discounted medications to patients who otherwise could not afford them. Complete the program applications as soon as you learn which drugs you’ll need.

(You can find these applications on drug company websites

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or through NeedyMeds.org.) When you report current income on these forms, remember to take into account that if cancer impairs your ability to work, your income may be lower this year.

4. Get help with transit and lodging. The American Cancer Society’s Road to Recovery and Patient Lodging Programs provide free rides to medical facilities and housing near them. The Healthcare Hospitality Network can point to additional housing options. Angel Flight and Air Care Alliance provide free flights to patients in need.

5. Reach out to support groups and social workers.

Nonprofit organizations associated with your specific type of cancer may be able to help you locate resources.

Ask the hospital where you receive care whether there is a social worker on staff who can help. Also, reach out to the Cancer Support Community, a nonprofit that provides information and community for cancer patients. “They’re lifesavers,” says Tomlinson, who now goes by “Patient Ted” and gives keynote addresses and TED talks on the role of compassion in medicine. “Any question you have about anything, they’re your resource.”

6. Include your health insurance company in the planning process. As soon as you work out a care plan with your doctors, contact your health insurance provider, ask to speak with a case manager, discuss the extent to which this treatment plan will be covered by your insurance and then ask the case manager for cost-cutting ideas. Perhaps you could save a bundle by getting an MRI at a freestanding MRI center rather than a hospital, for example. “People have a lot of issues with insurance companies,” says Vilmarie Rodriguez, director of patient assistance at the nonprofit CancerCare, which provides free support services. “But you have to use the tools you have, and they’re the ones who make the payments and the decisions.”

7. Know your rights regarding your job—and your student loans. The Americans with Disabilities Act protects people with cancer from discrimination and requires employers to offer them “reasonable accommodations,” such as flexible working hours and rest breaks. The Family Medical Leave Act often allows cancer patients and their caregivers to take up to 12 weeks of unpaid leave per year.

Speak with your employer’s human resources department—or, if necessary, an attorney specializing in labor law. If you have student loans, you may be able to defer payment for the duration of treatment plus six months; contact lenders to make this request.

8. Confirm—and reconfirm—that health care providers

ISTOCK

are in network. The odds that you will be responsible for a big share of a medical bill skyrocket if you are treated by a doctor or hospital that’s out of network. Caitlin Donovan, director of outreach for the National Patient Advocate Foundation, recommends these steps to avoid problems: • Ask your insurer whether hospitals and doctors are in network; ask providers whether they are in network for your insurance. Use email, if possible, as proof of the responses.

• Use the search tools on your insurer’s website to find additional evidence that providers are in network. Take and save screenshots.

• Get the name of every doctor who will be involved in hospital procedures—including anesthesiologists and radiologists—and confirm that every one of them is in network.

• When you check into the hospital and are instructed to sign forms agreeing to pay, also write: “I do not agree to receive treatment from out-of-network providers without my consent.”

ONLINE HELP These resources can help people with cancer get financial support.

They are all mentioned in this article: Air Care Alliance: aircarealliance.org American Cancer Society/Patient Lodging: cancer.org/treatment/support-programs-and-services/ patient-lodging.html American Cancer Society/Road to Recovery: cancer.org/treatment/support-programs-and-services/roadto-recovery.html Angel Flight: angelflight.com CancerCare: cancercare.org/financial_assistance Cancer Financial Assistance Coalition: cancerfac.org Cancer.Net: cancer.net/navigating-cancer-care/financialconsiderations/financial-resources Cancer Support Community: cancersupportcommunity.org Healthcare Hospitality Network: hhnetwork.org

9. Reevaluate your health insurance coverage NeedyMeds.org: needymeds.org each year. Cancer treatment often extends over Patient Advocate Foundation: patientadvocate.org more than one calendar year, and you don’t have to stick with the same insurance throughout. “Every single year, patients should be looking at their health insurance options and making comparisons to lower appeals can be found in the resources section of the Patheir out-of-pocket expenses,” says Joanna Morales, a tient Advocate Foundation’s website. If the insurer argues cancer rights attorney and CEO of Triage Cancer, a non- that a procedure was not medically necessary, ask your profit focused on practical and legal cancer issues. doctor to provide a letter explaining why it was necessary Explore the coverage options offered by your employer and include this with your appeal. or through the Affordable Care Act during open enrollment, If you have hospital bills you cannot afford, ask a hospital’s or review the Medigap, Medicare Advantage and Medicare fi nancial counselor whether the facility has a fi nancial Part D plans available to you. Select the coverage that assistance program and, if so, how you can apply. If all minimizes the out-of-pocket costs for your treatments else fails, tell the provider that you cannot possibly afford and medications and includes your preferred oncologists all your medical bills and try to use this as leverage to and hospitals in its network. negotiate a lower price. Or hire a medical billing advocate 10. Try to trim big bills. When you receive medical to tackle these bill-trimming strategies for you. bills, look up the CPT (current procedural terminology) codes listed on a website such as Coder.AAPC.com. (If FINDING YOUR WAY you don’t see codes listed, ask the provider for an itemized In a better world, people who are using their mental and bill—you have a right to see them.) If some codes do not physical energies to get the best cancer care, manage side seem to correspond to treatments you received, call the effects and maintain a good quality of life shouldn’t also provider and question them—billing errors are common. have to fight financial threats. But help is available—and If your insurer does not cover as much of a bill as you it’s growing. “We’re finding more resources,” says Landwehr. believe it should, fi le an appeal. Details about fi ling these “A lot of it is knowing where to look.” ■ For more on affording care: cancerhealth.com/finances

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YOUR TEAM

BY KURT ULLMAN

What Acupuncture Can Do Liem Quang Le, DAOM, is an acupuncturist in the Integrative Medicine Department at Moffitt Cancer Center in Tampa.

How is acupuncture related to traditional Chinese medicine (TCM)?

Acupuncture is part of TCM, a 3,000-year-old practice that also includes herbal therapy; manual therapies, such as cupping and massage; exercise; and dietary therapy. It doesn’t have specialties, such as oncology or cardiology. Instead, a TCM doctor treats the person as a single complex system.

While it is based on the concept of chi, or life energy, I don’t discuss chi with my patients. I talk about biological effects.

TCM is practical medicine.

Can Chinese and Western medicine work together?

Yes. It’s not one or the other.

Each has limitations. Working with oncologists, acupuncturists help maintain patient quality of life before, during and after treatment.

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We can’t treat everything, and we aren’t successful with everybody. But TCM has a positive impact on many cancer patients.

We see the person as a whole. Western doctors often focus just on cancer and not other issues a patient has.

One of the biggest contributions I make is helping keep your health optimal so you can continue cancer treatment.

Liem Quang Le, DAOM

Which side effects is acupuncture most effective in treating?

There is good evidence that acupuncture helps alleviate painful chemotherapy-related neuropathies. It quells nausea and vomiting, as well as diarrhea or constipation, due to radiation and chemotherapy. If radiation has caused dry mouth, acupuncture helps by stimulating the salivary glands.

Breast cancer patients can get relief from lymphedema, the swelling and pain caused by lymph node removal; acupuncture stimulates circulation to the area. Acupuncture can also improve recovery after surgery, reduce hot flashes due to hormone therapy, ease fatigue and reduce stress, anxiety

and insomnia.

Studies have shown acupuncture to be safe; in rare cases, there can be slight bruising at the needle insertion site.

What is the most inspiring part of your work?

I am part of improving quality of life, especially for survivors.

During treatment, you will have a community around for support.

But afterward, most of this goes away, and you are left on your own. I can guide you on how to stay in control of your health.

I say I am the luckiest doctor at the cancer center because I am the only person the patients like to see, and they leave feeling relaxed and smiling. ■ Who’s on your team? cancerhealth.com/team

COURTESY OF LIEM QUANG LE

What is acupuncture?

Acupuncture uses very fine needles that are sterilized and inserted into specific points on the body. This elicits effects such as improved circulation, which in turn enhances the flow of oxygen and nutrients throughout the body. It can improve organ function and stimulate the nervous system to release natural painkillers and mood modulators.

BY MEAVE GALLAGHER

RESOURCES

Childhood Cancer FAMILIES OF CHILDREN WITH CANCER FACE SPECIAL challenges. Here are some places to seek financial, emotional and educational support.

Alex’s Lemonade Stand Foundation alexslemonade.org Alex’s Lemonade Stand has a Travel for Care fund to help children access treatment and a support program for siblings.

Along Comes Hope alongcomeshope.com Along Comes Hope offers financial aid to families of children with cancer who must travel for treatment and has an extensive online resource guide.

American Childhood Cancer Organization acco.org ACCO’s resources for children and teens with cancer include treatment journals, comfort kits and stuffed animals. Parents can access 24-hour online peer support and get connected with local support groups.

ISTOCK

Andrew McDonough B+ Foundation bepositive.org The B+ Foundation provides financial assistance to families of children and young adults diagnosed with cancer and funds childhood cancer research.

Camp Quality campqualityusa.org Camp Quality’s 18 locations Read about childhood cancer: cancerhealth.com/childhood

welcome children with cancer to free weeklong summer camps and offer events for teens, families and siblings too.

Children’s Cancer Center childrenscancercenter.org In addition to onsite support and therapy groups at its Tampa location, Children’s Cancer Center offers financial assistance through its Fueling Families program and White Hat Fund.

The Children’s Inn at NIH childrensinn.org Children receiving treatment at the National Institutes of Health’s Clinical Center and their families can stay for free at The Children’s Inn. The Children’s Cause for Cancer Advocacy childrenscause.org The CCCA’s webinar series includes videos on resources for assistance, survivorship, and financial and treatment access.

Its College Scholars Program awards two annual scholarships.

Coalition Against Childhood Cancer cac2.org/family-resources CACC’s Hope Portal is a searchable database of organizations that offer different types of help to children with cancer and their

families, including financial aid and emotional support.

CureSearch for Children’s Cancer curesearch.org CureSearch’s resources include information about clinical trials, clear explanations of diagnoses and treatments, and educational resources for children with cancer and their families.

Make-A-Wish wish.org The U.S.-based nonprofit gives children with serious illnesses a once-in-a-lifetime experience.

Any critically ill child between ages 2½ and 17 is eligible.

The National Children’s Cancer Society thenccs.org The NCCS provides financial assistance and emotional support to families of children with cancer and awards college scholarships to childhood cancer survivors.

SeriousFun Children’s Network seriousfunnetwork.org SeriousFun offers children with serious illnesses the chance to “raise a little hell” at one of its 30 free camps and does in-person outreach to children who can’t attend camp.

cancerhealth.com

FALL 2019

CancerHealth 29

GOOD STUFF

BY MEAVE GALLAGHER

GIFTS FOR ALL SEASONS What to give—or add to your wish list

Treatment turned your life upside down? Get organized with the CanPlan Cancer Planner ($44.95). Sharon Kim designed this comprehensive system after her mother’s endometrial sarcoma diagnosis threw their lives out of whack. Undated calendar pages allow you to track your treatment, side effects, tests and results, and well-being up to a year. Blank pages give you space to record your reflections. Special inserts for appointments, treatment options and journaling will help anyone feel more on top of their lives during a difficult time.

Save time and effort with a meal-prep delivery service such as Freshly, which offers healthy cooked meals you just have to heat and serve. Prices start at $8.99 per meal, and meal plans cater to vegetarian, gluten-free, high-protein and paleo diets.

You can customize the number of meals you receive per week and put the service on hold. Or give ready-made meals to someone who could use them with a gift certificate.

“Feed a fever, starve a cold, but what do we do for cancer?” wonders Karen Babine in her memoir All the Wild Hungers: A Season of Cooking and Cancer ($16, Milkweed Editions).

To cope with her mother’s rhabdomyosarcoma diagnosis and help combat the wasting that followed chemotherapy, Babine prepared fantastical meals. Her collection of essays written during her mother’s treatment are meditations on sickness and healing and on food as medicine, as well as a tribute to her mother, who died before publication.

30 CancerHealth FALL 2019 cancerhealth.com

Take your medical devices along wherever you need them in the Kova Bag ($59.99), a small washable tote that helps you feel more like yourself while in treatment or after surgery.

Designed by Angie Smilgius after seeing her sister Jennifer undergo multiple treatments for melanoma, Kova Bags are light, easy to carry and hold up to three 3.4-ounce postsurgical drainage bulbs or other medical devices, along with smaller items.

A clean home is a lovely gift—especially when it’s free.

Cleaning For A Reason offers two free monthly house cleanings to people in treatment for cancer.

The organization partners with local services across the United States and Canada and has served more than 33,000 people since 2006. Friends and loved ones can also apply on behalf of the person in their life facing cancer.

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

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LIFE WITH CANCER

BY AVIE BARRON

I Turned Blue Last Night

Cancer Health blogger Avie Barron, 35, lives in Southern California with her husband and three children.

32 CancerHealth FALL 2019 cancerhealth.com

this time, it was for a very different reason. I was being presented with a blue belt.

In jiujitsu, you start from the bottom with a white belt and then progress to blue, then on to purple, brown and finally black.

It’s a sport that requires a certain level of crazy and stubborn. The blue belt is a symbol that you are no longer a beginner, a noob.

For me, turning blue meant so much more. The last three years have tested me, pushed me and almost broken me. I was tempted so many times to just give up on jiujitsu and focus on beating cancer. I had to fight the aches and pains of chemo on top of the normal pain and bruising from training. I kept going even when I could hardly breathe.

Why? I needed the release of pushing myself to avoid the depression of being sick.

This blue strip of cloth is my reminder that not only did I beat cancer, but I crushed that voice inside myself that said I couldn’t.

It’s my reminder that I am

Avie Barron with her husband, Tim, (right) and her coach, Orlando

blessed to keep fighting when so many others have lost their own battle. It’s my reminder that if I can get through the last three years of everything that has been thrown at me that I have no excuse not to keep going.

The truth is, I’m just getting started. I’ve found the thing that pushes me, grows me, challenges me. No more excuses that I’ll do it someday. Cancer has a way of showing you that sometimes there is no someday, that there’s only today to make the most of what you have. ■ Read Avie’s blog: cancerhealth.com/barron

COURTESY OF AVIE BARRON

THREE YEARS AGO, I TOLD my husband, Tim, that I wanted to try something different. So we went to the new gym in our hometown, signed waivers and stepped onto the mats with no shoes on. For the next hour, we were introduced to Brazilian jiujitsu, the combat martial art.

I was so nervous that I turned a little blue from holding my breath. By the end of the night, we were sore, exhausted— and hooked.

A year later, though, my coach, Orlando, became concerned for me because my face kept turning blue during training. I’d been finding it harder to breathe and feeling pains in my chest but figured it was bronchitis.

It turned out to be something more serious. In June 2017, I was diagnosed with Stage II non– Hodgkin lymphoma in my right lung. It was an aggressive cancer.

I went through seven cycles of chemotherapy and four weeks of radiation. My treatments ended in February 2018, but I was left with a lot of scar tissue in my lung. I was constantly aching and weak, and although my doctors warned me to stay away from jiujitsu, I kept going, hoping it would speed up my recovery.

In April of this year, standing in front of my coach and jiujitsu team, I turned blue again. But

SURVEY

SIDE EFFECTS All cancer treatments come with side effects, but not all side effects are the same, and everyone’s experience is different. Cancer Health wants to know what side effects you’ve experienced and how they affect your quality of life.

1

If you’ve been diagnosed with cancer, what type was it? ____________________

2

Have you received treatment for cancer? ❑ Yes ❑ No (Skip to question 4.)

3

What kind of treatment have you received?

(Check all that apply.) ❑ Chemotherapy ❑ Immunotherapy Radiation therapy ❑ ❑ Surgery ❑ Targeted therapy ❑ Other: _________

4

5

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6

What physical side effects have you experienced? (Check all that apply.) ❑ Anemia ❑ Burns ❑ Chronic pain ❑ Constipation ❑ Diarrhea ❑ Dry skin ❑ Fatigue ❑ Hair loss ❑ Insomnia ❑ Loss of appetite ❑ Mobility issues ❑ Mouth sores ❑ Nausea ❑ Neutropenia Peripheral neuropathy ❑ ❑ Skin rash ❑ Vomiting ❑ Weight gain ❑ Weight loss ❑ Other: _________ ❑ None What mental health side effects have you experienced? (Check all that apply.) ❑ Anxiety ❑ Brain fog Depression ❑ ❑ Mood swings ❑ Other: _________ ❑ None Have you been prescribed medications for side effects? ❑ Yes ❑ No (Skip to question 8.)

7

Have the medications helped? ❑ Yes ❑ No

8

What complementary or alternative therapies have you used to manage side effects?

(Check all that apply.) ❑ Acupuncture ❑ Cannabis (marijuana) Herbal remedies ❑ ❑ Massage ❑ Meditation

❑ Yoga ❑ Other: _________ ❑ None (Skip to question 10.)

9

Have these therapies helped? ❑ Yes ❑ No

10 How much have side effects affected your quality of life?

❑ Very much ❑ A moderate amount

❑ A little ❑ Not at all 11 How would you rate your physical health?

❑ Excellent ❑ Good

❑ Fair ❑ Poor 12 How would you rate your mental health?

❑ Excellent ❑ Good

❑ Fair ❑ Poor 13 What year were you born? __ __ __ __ 14 What is your gender?

❑ Male ❑ Female

❑ Transgender ❑ Other 15

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): ________________

16 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 #7, 212 West 35th Street, 8th Floor, New York, NY 10001

Chemotherapy may destroy your cancer, but it doesn’t have to destroy your hair. “ Not having that reminder every time you look in the mirror that you are sick, and you look normal to your friends and family, made the chemo much more bearable. Instead of illness, I saw myself. Many people had no idea I had cancer.”

- Carolyn Dempsey, NY

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