Cancer Health Spring 2019

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

BECOMING AN ADVOCATE From Treatment to Survivorship How Patients Are Revolutionizing Research Restoring Sexual Health

Second Opinion Tips

A Brain Cancer Diary

“So You’re OK Now?”

Florence Kurttila

A breast cancer diagnosis is scary, but we can help.

At Living Beyond Breast Cancer, we understand that knowledge is power.

We have a library of informational videos that cover relevant breast cancer topics. | Let’s Talk About It: A video series focusing on issues that impact young women with breast cancer | How-To Style Series: Videos that focus on post-surgery and chemotherapy needs | Prepping for breast surgery and chemotherapy with tips and insight from women who have first-hand experience | Yoga safe for breast cancer guided by two certified yoga instructors

Visit lbbc.org/videos to learn more and view our video library.

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CONTENTS

E xclusively on

Cancer Health.com

Cancer Health 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

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Treatment News Read about the latest treatment advances and conference news. cancerhealth.com/treatment

From left: patient advocates Corrie Painter, Liz Salmi and Stacey Tinianov with Cancer Health editor Liz Highleyman (see page 22)

16 BECOMING AN ADVOCATE Florence Kurttila brings a patient’s insights to the world of colon cancer research. BY ROBIN WARSHAW Plus: Living well with an ostomy 22 TAKING THE LEAD Patient advocates are reshaping research. BY BRYN NELSON

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(COVER) ALANNA HALE; THIS PAGE: (GROUP) COURTESY OF LIZ HIGHLEYMAN (“CANCER,” IV TREATMENT AND TYPEWRITER) ISTOCK

Cancer Health Blogs Check out our selection of blogs by people living with cancer, advocates 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.

3 From the Editor From patient to advocate 4 Cancer Health News Cancer-friendly spas | social media pros and cons | shine a light for better sleep | websites worth watching 6 Care & Treatment Preventing breast cancer recurrence | breast conservation | GI cancer roundup | cancer deaths falling | new meds for liver cancer | boosting trial entry | targeted treatment for leukemia

14 Diary Adam Hayden talks about living with brain cancer.

26 Your Team Ann Partridge helps survivors find their new normal.

28 How To Getting a second opinion 30 Fresh Air Products for a spring in your step 31 Resources Support for survivors

10 Voices Chelsea Dawson on staying safe in the sun

32 Life With Cancer Jen Hodson answers the question “So you’re OK now?”

12 Basics Sexual health | chemo brain

33 Survey Tell us about your advocacy.

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SPRING 2019

CancerHealth 1

No other foundation has invested more in melanoma research…

In ten years MRA has invested over $100 million in 266 research projects across 15 countries – including 38 clinical trials. Our funded research has studied 96 unique therapeutic approaches, including all of the last 12 FDA approved treatments. Our research is extending the lives of patients and is making a critical different across all of oncology.

MRA-funded research is creating a ripple effect across oncology. Lessons learned first in melanoma with immunotherapy have created new treatment options for lung cancer, er, er kidney cancer, er, colorectal cancer, er er er, bladder cancer er, gastric cancer, er er, Hodgkin’s lymphoma, head and neck cancer and is being studied on many others.

We’ve only just begun. Join us.

CureMelanoma.org/Donate

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FROM THE EDITOR

Cancer Health TM

EDITOR-IN-CHIEF Liz Highleyman MANAGING EDITOR Jennifer Morton SENIOR EDITOR Meave Gallagher COPY CHIEF Joe Mejía EDITORIAL ASSISTANT 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 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 Caroline Rabiecki, Greg 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

(HIGHLEYMAN) WINNI WINTERMEYER

CONTROLLER Joel Kaplan Issue No. 5. 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.

From Patient to Advocate ONE OF OUR MAIN GOALS AT Cancer Health is to encourage people living with cancer to become advocates, both to improve their own care and quality of life and to push for better treatments and wider access for everyone who needs them.

Our sibling magazine, POZ, which turns 25 this year, has its roots in AIDS advocacy. During that time, HIV transformed from a fatal disease to a manageable chronic condition, thanks to the efforts of researchers, clinicians, pharmaceutical companies and the activists who demanded that they do more, faster. And they did. Once medications kept people alive, advocacy shifted to making treatment tolerable and easy to use; with that accomplished, the focus turned to a cure. Through it all, self-empowerment has been at the forefront.

Cancer is not there yet. New targeted therapies and immunotherapies hold promise, but they still don’t work for most patients. Many people with cancer are happy if treatment can give them a few more months or years, even at the cost of diminished quality of life. But we need to do better—and advocates are stepping up to make that happen.

Florence Kurttila, on our cover, was successfully treated for colon cancer but later lost her husband to an aggressive form of the disease.

On page 16, she shares how she applied her insights to advocate for patient-centered care and research.

Patient-led research projects, described on page 22, bring people

with cancer and scientists together to address unanswered questions and unmet needs, from more effective drugs to more compassionate care.

For people who are successfully treated, the cancer journey doesn’t end there. Ann Partridge explains how a survivorship counselor can help adjust to a new normal (page 26), and Jen Hodson tells it like it is about the lingering mental and physical challenges for survivors (page 32).

People currently living with cancer, survivors and their loved ones can all be effective advocates. Working together across cancer types—and with people with other diseases— provides the strength in numbers we need to demand better and more accessible health care.

LIZ HIGHLEYMAN Editor-in-Chief lizh@cancerhealth.com Twitter: @LizCancerHealth

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CancerHealth 3

NEWS

BY BOB BARNETT

Cancer-Friendly Spas Julie Bach lost both her parents to cancer. Her dad went first. When Bach’s mom developed ovarian cancer and serious depression, there was no one at home to take care of her. Julie’s then husband had a recommendation. “Your mother needs to go to a spa,” he said. “She needs to be touched.”

Bach arranged spa treatments at a local cancer center, and they greatly eased her mother’s journey.

Many people aren’t so lucky. “Most spas turn people with cancer away,” Bach says. Reasons range from myths that massage could spread cancer (it can’t) to concerns about not being educated enough about cancer to be helpful. Bach has made it her life’s work to change all that. Since 2012, her organization, Wellness for Cancer, has trained staff at more than 200 hotels and spas around the United States and in 40 other countries.

While many major cancer centers offer integrative care, including specialized oncology massage— as do a few spas—the goal of Wellness for Cancer isn’t to train spa staff to provide medical services.

Rather, it helps staff develop the knowledge and

sensitivity needed to offer standard services such as massage, skin care treatments, meditation and yoga to cancer patients during and after treatment. Staff members are educated about cancer and trained to make adjustments— for example, not to massage near a chemo port or near areas where lymph nodes have been removed or radiated. People currently being treated for cancer should check with their own care team about precautions too.

“People want normalcy, flexibility and compassion,” says Bach. “After you are treated at a cancer center, you still need to heal, to take time for yourself, ideally in a beautiful place that’s created to help you reset and renew.” Often, caregivers go too. Bach aspires to develop a directory of cancer-friendly spas; until then, email her for local suggestions (Julie@wellnessforcancer.com).

Facebook, Twitter and other social media platforms allow people with cancer to connect with one another immediately.

That has both pros and cons, according to a recent article in the Journal of Oncology Practice.

PROS: Social media provides psychological and social support, facilitating conversations about the emotional, spiritual and physical challenges of living with cancer and empowering patients

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to “mentally process their cancer experience,” the authors write. It can also provide useful information.

Searching your specific diagnosis via a Twitter hashtag can connect you to online communities of people with the same type of cancer and help you find clinical trials.

CONS: Social media can be both factually unreliable and unsupportive, so it shouldn’t become a substitute for in-person support or expert advice. It can even lead to

financial exploitation—beware of unproven cure claims!

Privacy is also at risk: Social media sites are public, so be careful about posting personal medical information.

Physicians can help by becoming familiar with social media, using it for education and outreach—and being a resource for their patients.

If you learn something that may affect your care, bring it to your doctor’s attention for an expert opinion.

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SOCIAL MEDIA PROS AND CONS

Websites Worth Watching Fight Colorectal Cancer (fightcolorectalcancer.org) March is Colorectal Cancer Awareness Month. This patient advocacy organization pushes for better policies and supports research, education and awareness. See “Becoming an Advocate,” page 16.

Count Me In (joincountmein.org) Patient-partnered research is changing the future of cancer, facilitating collaboration between people with cancer and researchers. See “Taking the Lead,” page 22.

I Had Cancer (ihadcancer.com) This award-winning website, created by a breast cancer survivor, promotes peer-to-peer storytelling.

Be sure to follow Cancer Health on Facebook (facebook.com/ cancerhealthmag), Twitter (@cancerhealthmag) and Instagram (cancerhealth).

SHINE A LIGHT FOR BETTER SLEEP Cancer often upends sleep. Medications can offer temporary relief, but in many cases, they’re not very effective, and some people don’t want to add yet another drug to their regimen.

Bright light in the morning may help. Exposure to light stimulates cells in our eyes that influence the brain’s “master clock,” helping to set—and reset—sleep/wake cycles, explains Lisa M. Wu, PhD, a clinical psychologist at Northwestern University’s Robert H. Lurie Comprehensive Cancer Center in Chicago.

In a small study published in the Journal of Clinical Sleep Medicine, men and women who had finished treatment for a range of cancers spent 30 minutes each morning for 30 days using a bright light box.

These devices, available commercially, simulate the intensity and color of natural sunlight. Compared with individuals in a control group who looked at dim light, those in the bright light group had a modest improvement in sleep efficiency, meaning the time in bed that is spent asleep rather than awake. “Bright light therapy is a low-risk, low-cost approach,” says Wu. Even three weeks after treatment ended, study participants were sleeping just as well. One hypothesis is that sleeping better gave them more energy so they were able to get outside more, get exercise (which also helps with sleep) and get exposure to sunlight.

“Natural sunlight is brighter than light from any light box,” Wu says.

Too tired to get outside? It also helps to sit next to a window with natural light exposure. Be sure to let the light reach your eyes.

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CancerHealth 5

CARE & TREATMENT

BY LIZ HIGHLEYMAN

Delaying chemotherapy after breast cancer surgery increases the risk of recurrence and death, according to research presented at the 2018 San Antonio Breast Cancer Symposium in December.

Treatment for localized breast cancer typically includes surgery followed by radiation therapy or chemotherapy—known as adjuvant therapy—to kill off any remaining cancer cells and reduce the risk of relapse.

In a study of nearly 700 women with mostly Stage II or III triplenegative breast cancer, those who waited more than a month after surgery to start chemotherapy had worse outcomes.

The 10-year overall survival rate

was 82 percent for those who started within a month but fell to 67 percent for those who waited longer.

“After this period of time, the benefit of the chemotherapy is significantly diminished,” says Zaida Morante, MD, of Instituto Nacional de Enfermedades Neoplásicas in Lima, Peru.

Another study found that Kadcyla, an antibody-drug

conjugate, reduces the risk of breast cancer recurring and spreading after surgery.

The KATHERINE trial enrolled nearly 1,500 people with HER2-positive breast cancer who took Herceptin (trastuzumab) before surgery but still had some residual cancer at the time of the operation. After surgery, they were randomly assigned to receive Herceptin or Kadcyla, which combines the trastuzumab antibody with a chemotherapy drug.

At three years postsurgery, 88 percent of those in the Kadcyla group and 77 percent in the Herceptin group were still alive without invasive disease—a 50 percent reduction in the risk of cancer recurrence or death.

BREAST CONSERVATION Choosing breast-conserving surgery instead of mastectomy could mean better quality of life, according to a study presented at the 2018 San Antonio Breast Cancer Symposium.

Although around three fourths of women are eligible for breast-conserving surgery, a growing number opt for bilateral mastectomy, or complete removal of both breasts, according to Laura Dominici, MD, of Dana-Farber/Brigham and Women’s Cancer Center in Boston.

Dominici’s team looked at postsurgery outcomes among 560 young women (under age 40) diagnosed with breast cancer. About 30 percent had breast-conserving surgery, about 20 percent had unilateral mastectomies and

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about half had bilateral mastectomies; most also had reconstructive surgery.

Using a survey called BREAST-Q, the researchers found that women who had mastectomies reported poorer psychosocial and sexual well-being than those who chose breastconserving surgery.

“Women are becoming increasingly involved in the decision-making process, so we must make sure they have as much information as possible about long-term outcomes, including quality of life,” Dominici says.

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Preventing Breast Cancer Recurrence

Scott Kopetz, MD, PhD

COURTESY OF LIZ HIGHLEYMAN

GI Cancer Roundup The 2019 Gastrointestinal Cancers Symposium in February featured the latest research on cancers of the digestive tract.

Immunotherapy was a common theme across cancers. The KEYNOTE-181 trial showed that esophageal cancer patients with PD-L1 levels of at least 10 percent who used the checkpoint inhibitor Keytruda (pembrolizumab) had a 31 percent lower risk of death than those who used chemotherapy.

Earlier treatment was another theme. Opdivo (nivolumab), a checkpoint blocker that delays disease progression in people with inoperable advanced liver cancer, may also shrink tumors before surgery. In a pilot study, three of eight people who used neoadjuvant, or preoperative, Opdivo alone or with another drug had complete remission. Another study showed that people who received neoadjuvant chemotherapy before pancreatic cancer surgery had better outcomes than those who had surgery right away.

Another checkpoint inhibitor, Imfinzi (durvalumab), looks promising for colorectal cancer with a genetic characteristic known as high microsatellite instability. About a quarter of people with this mutation experienced tumor shrinkage in two small studies, and one-year survival reached 80 percent.

As these studies show, genetic testing to determine which treatments are likely to work is an increasingly important aspect of cancer care. Genetic sequencing is recommended for metastatic colon cancer, but many people are not getting it, according to Scott Kopetz, MD, PhD, of MD Anderson Cancer Center. Citing the awareness work of advocates, he says, “Educated patients can drive optimal biomarker testing.”

CANCER DEATHS FALLING Cancer is still the second leading cause of death in the United States—after heart disease—but mortality is declining.

Over 25 years, the cancer death rate dropped by 27 percent, according to a new report from the American Cancer Society. That translates to 2,629,200 fewer deaths. The main reasons: less smoking and early detection and treatment.

But the report also shows that cancer affects some groups more than others.

While racial disparities have narrowed, socioeconomic gaps are widening— especially for preventable cancers.

Lower-income people are more likely to have risk factors such as smoking or obesity but less likely to receive timely screening and treatment.

DECLINE IN CANCER-RELATED DEATHS BETWEEN 1991 AND 2016

24%

27% OVERALL DECLINE

DECLINE IN WOMEN

34% DECLINE IN MEN

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CancerHealth 7

CARE & TREATMENT

BY LIZ HIGHLEYMAN

NEW MEDS FOR LIVER CANCER With the Food and Drug Administration (FDA) approval of three new treatments in the past six months, liver cancer has entered a new era of options.

Hepatocellular carcinoma (HCC), the most common type of liver cancer, doesn’t respond well to chemotherapy. The first targeted therapy for HCC, Nexavar (sorafenib), was approved in 2007. A decade passed before the FDA OK’d another targeted drug, Stivarga (regorafenib), and the first immunotherapy for HCC, Opdivo (nivolumab).

But then the number of liver cancer drugs doubled in just a year. The FDA approved Lenvima (lenvatinib) last August, Keytruda (pembrolizumab) in November and Cabometyx (cabozantinib) in January.

Cabometyx and Lenvima—like Nexavar and Stivarga—are kinase inhibitors that block enzymes that play a role in cell growth and blood vessel development.

Keytruda and Opdivo are PD-1 checkpoint inhibitors that help immune cells fight cancer.

These medications don’t work for everyone, and they can stop working if the cancer develops resistance. But having more options makes it easier to put together a sequence of treatments to keep liver cancer under control.

Boosting Trial Entry Overly restrictive entry criteria may be keeping out many people with cancer who could benefit from clinical trials—but researchers and patient advocates are working to change that.

Clinical trials can be a good way to gain access to promising new treatments, but entry restrictions often exclude older people, patients with more advanced disease and those with other illnesses or conditions.

People with coexisting conditions, such as hypertension, asthma or a prior cancer, are less likely to talk to their doctor about trials, less likely to be offered a chance to participate and, ultimately, less likely to enroll, according to a study from SWOG, an international cancer clinical trials network.

The American Society of Clinical Oncology, Friends of Cancer Research and the Food and Drug Administration recently recommended that trial eligibility be expanded to include people with certain coexisting conditions, including HIV, kidney or liver impairment, and

8 CancerHealth SPRING 2019 cancerhealth.com

brain metastasis (cancer that has spread to the brain).

The SWOG study, published in JAMA Oncology, found that implementing these changes would enable 6,317 more people to join trials and receive experimental treatments that could potentially extend or improve their lives. Removing all comorbidity restrictions could allow nearly 12,000 more people to join.

“Cancer clinical trials provide high-quality, guideline-based care for cancer patients,” says Joseph Unger, PhD, a health services researcher for SWOG at the Fred Hutchinson Cancer Research Center in Seattle. “Allowing people with manageable comorbidities to join trials would increase treatment opportunities for several thousand patients.”

ALL IMAGES: ISTOCK

Targeted Treatment for Leukemia Targeted therapies are gaining ground as the standard of care for chronic lymphocytic leukemia (CLL), according to studies presented at the 2018 American Society of Hematology annual meeting in December.

The most common type of adult leukemia, CLL involves overproduction of abnormal white blood cells in the bone marrow. Chemotherapy can sometimes put CLL into remission, but relapse is common and it usually can’t be cured.

Imbruvica (ibrutinib) and Venclexta (venetoclax) are oncedaily pills that interfere with the growth of malignant B cells.

Rituxan (rituxumab) and Gazyva (obinutuzumab) are monoclonal antibodies given by IV infusion that attach to a receptor on B cells and help the immune system attack the cancer.

In January, the Food and Drug Administration approved Imbruvica plus Gazyva as the first non-chemotherapy regimen

for previously untreated people with CLL. A Phase III clinical trial showed that the combination reduced the risk of disease progression or death by 77 percent compared with chemotherapy. Estimated 30-month progression-free survival (PFS) rates were 79 percent and 31 percent, respectively.

In another study, Jennifer Woyach, MD, of Ohio State University Comprehensive Cancer Center in Columbus, and colleagues showed that first-line treatment with Imbruvica alone delays disease progression or death in people over 65, who often can’t tolerate intensive chemotherapy. The estimated two-year PFS rate was 87 percent with Imbruvica versus 74 percent with the chemo drug bendamustine and Rituxan.

“Our results establish that ibrutinib should be a standard of care for older patients with CLL,” Woyach says.

Targeted therapy may also be

a better first option for younger people eligible for intensive chemotherapy. In a study of patients with a median age of 58, Imbruvica plus Rituxan led to longer progression-free and overall survival—and caused fewer severe side effects—than the chemo drugs fludarabine, cyclophosphamide and Rituxan.

Other studies have seen good outcomes using Venclexta alone or in combination regimens. The Phase III MURANO trial found that after three years of follow-up, progression-free survival rates were 71 percent with Venclexta plus Rituxan versus just 15 percent with bendamustine and Rituxan in people with hard-to-treat relapsed or refractory (nonresponsive) CLL. Venclexta plus Gazyva and Imbruvica plus Venclexta have also shown promising activity.

Next up: a chemotherapy-sparing triplet of Imbruvica, Venclexta and Gazyva, now in late-stage clinical trials.

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CancerHealth 9

VOICES

BY CHELSEA DAWSON

Stay Safe in the Sun I GREW UP IN THE BRIGHT, beautiful sunshine on the Virgina shore. Shade was something we avoided, sunscreen was applied when we remembered and the idea of wearing a shirt over my bathing suit was enough to make me roll my eyes at my mother. I loved nothing more than feeling the sun on my shoulders.

Protecting my skin was not high on my list of priorities.

Everything changed when I was diagnosed with Stage III malignant melanoma at age 23. Despite growing up on the beach and using tanning beds for years, I had never seen a dermatologist. In December 2010, a mole on my back turned into a scab and began to leak clear fluid. I didn’t know much about melanoma, but I knew that a changing mole was a warning sign I shouldn’t ignore.

By the time my appointment with the dermatologist rolled around, the mole had healed.

The doctor did a full body exam, educated me about the need for sunscreen and yearly skin checks and removed the healed mole to be on the safe side.

Because of his positive attitude, I left the office feeling assured that everything was fine.

Two weeks later, I was informed that the mole was melanoma.

Chelsea Dawson and her son, Lee

After an incredibly painful surgery, we learned that the cancer had spread to lymph nodes on both sides of my body. I enrolled in a clinical trial of an immunotherapy drug, Yervoy (ipilimumab), to prevent cancer recurrence. I was treated for the next three years and then continued surveillance until my oncologist discharged me in December 2017.

We often hear from medical professionals that we should get routine skin checks. I learned firsthand how important that is!

Since my original diagnosis, I’ve

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had two additional melanoma lesions removed during routine dermatology screenings. My family members have also become loyal to their screenings.

My mom had an earlystage melanoma, and my grandmother has had numerous skin cancer lesions removed. I can’t help but wonder what would happen if we became too busy living our lives and canceled our yearly screenings—it’s too scary to consider!

Now that I’m a melanoma survivor and a mom, I’m creating a life very different from the one I lived. We still love days on the beach, but we follow the rules of sun safety. Although he is only 2 years old, my toddler knows that we don’t have fun in the sun without the protection of shade, sunscreen and UVblocking clothing.

When I was first learning to navigate life post-melanoma, I recall feeling scared of the sun.

After time and healing, I’ve learned not to fear the beautiful sunshine but to respect it.

Society now embraces the need for sun protection with fashionable UV-protective clothes, beach umbrellas and many types of sunscreen. Thanks to research and education, protecting our skin is now a priority! ■

(DAWSONS) COURTESY OF CHELSEA DAWSON

Chelsea Dawson, an eight-year melanoma survivor, lives with her family in Roanoke, Virginia.

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BASICS

BY PIPPA WYSONG

Sexual Health

SEXUALITY IS AN IMPORTANT part of life that contributes to the well-being of individuals and couples. Cancer and its treatment can lead to changes that affect various aspects of sexual health, including arousal, ability to reach orgasm and general interest in sex.

These changes can in turn affect self-identity and relationships. Partners may have a hard time understanding a lack of sexual interest and may need time to adapt to changes. Single people may have concerns about when to bring up cancer and its effects while dating.

Cancer treatment can lead to changes in appearance and function that make people feel self-conscious and lower their self-esteem, which can lead to a decreased interest in sex. These changes may be temporary, such as hair loss due to chemotherapy. Others are permanent, such as scars from surgery or the loss of a breast or limb.

Some people will need to use medical devices, such as an implanted port for chemotherapy or a colostomy bag.

Some types of chemotherapy, pain relievers and other medications can reduce sex drive and interfere with sexual arousal.

Hormone therapy that blocks estrogen or testosterone can affect sexual desire and function. Men may have trouble getting an erection. Premenopausal women may experience symptoms of menopause, including hot flashes and vaginal dryness that can make intercourse painful.

Surgery and local treatment for prostate, testicular, ovarian, bladder, colon and other cancers can affect sexual and reproductive function. The removal of both testicles will stop testosterone production, and many men will require replacement therapy; however, if only one testicle is removed, the other can usually compensate. Removal of the

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ovaries dramatically decreases estrogen levels.

For young women, egg freezing may be an option to preserve fertility.

The ability to be sexually active and remain intimate during treatment will vary depending on the specific cancer and type of therapy.

Before treatment starts, ask your care team whether it’s likely to affect sexual function and whether there are ways to prevent or lessen these problems. In some cases, medications, devices or exercises may be helpful.

Understanding and being prepared for changes that might affect sexual desire and function is important for people living with cancer and their partners so they can work on strategies to maintain intimacy.

If intercourse isn’t an option, you can explore other ways to be intimate. But it can take time and effort to get back to the same level of intimacy you enjoyed before you had cancer.

Open, honest communication between partners is key. A sex therapist or marriage counselor may be able to facilitate communication and help set realistic expectations. Some hospitals offer sexual rehabilitation programs. Support groups may be another option—talking with others who are dealing with the same issues can be helpful and reassuring. ■

ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

Cancer and its treatment can lead to changes that affect sexual desire and function.

BY LIZ HIGHLEYMAN

BASICS

What Is Chemo Brain?

Brain fog can have many causes including cancer itself and different types of treatment. during treatment, and about a third will have longer-lasting mental changes, according to the American Society of Clinical Oncology.

Surgery, radiation and some medications— as well as tumors themselves—can trigger inflammation that affects the brain. Some chemotherapy drugs interfere with neurotransmitters. Hormone therapy that lowers estrogen or testosterone levels can lead to foggy thinking. Some types of immunotherapy can cause neurological side effects. In addition, pain medications are a common cause of confusion and reduced alertness.

What’s more, having a serious illness can bring about stress, anxiety, depression or insomnia, all of which can affect cognition.

Cancer and its treatment often cause fatigue, which can afCOPING WITH BRAIN FOG fect the ability • Use a day planner or phone app to keep track of to concentrate. daily activities and to-do lists.

In many cases, • Carry paper and a pen to jot down reminders, or it can be hard use voice memos on your phone. to tell whether • Schedule mentally demanding tasks at times of the underlying the day when you feel most alert. illness or its • Get enough sleep, eat a healthy diet and engage treatment are in regular physical activity. responsible— • Exercise your brain too—try word or math and likely both puzzles, playing music or learning a new skill. contribute.

• Tell friends and family what you’re going through and ask for help.

Not everyone undergoing

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PEOPLE LIVING WITH CANCER often experience changes in thinking or memory before, during or after treatment. These may include reduced mental sharpness, trouble finding the right words, a short attention span and forgetfulness—commonly known as “brain fog.”

Experts don’t know how to prevent these changes, but there are ways to cope with them.

“Chemo brain” refers to cognitive changes in people undergoing cancer treatment. While chemotherapy is most often blamed for brain fog, it can have many causes, including cancer itself and other types of therapy.

Cancer that arises in or spreads to the brain can lead to impaired cognitive function and mood changes. But people with other types of cancer also experience mental changes. Up to 75 percent of people with cancer may experience cognitive problems

cancer treatment will experience chemo brain, and specific symptoms vary from person to person.

Risk factors include older age, genetic predisposition and higher medication doses. Changes can range from subtle to impossible to miss. Often these are shortterm side effects that will improve after treatment ends, but in some cases, they can be longterm or even permanent.

Brain fog can affect your ability to work or carry out daily activities. Tell your care team if you’re having problems with thinking or memory. There is no standard treatment for cancerrelated cognitive problems, but there are ways to compensate.

Identifying the triggers and timing of brain fog is the first step. Many people find it helpful to keep a journal to record their symptoms. For severe problems, a neuropsychologist, occupational therapist or other specialist may be able to help with cognitive rehabilitation. ■

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CancerHealth 13

DIARY

AS TOLD TO MEAVE GALLAGHER

A Brain Cancer Diary

Adam Hayden is a 36-year-old philosopher, advocate and writer who lives in Indianapolis with his wife and three sons. His blog, Glioblastology, is featured on CancerHealth.com.

I had my first seizure the day after Christmas. I got dizzy, felt pins and needles on the left side of my body and had to lie down. After a couple minutes, the feeling subsided. I explained it away as stress.

March 2015 I had a second “episode.” My general practitioner began a process of elimination but couldn’t diagnose anything. After a third episode, my doctor referred me to a physical therapist, in case it was caused by a pinched nerve or bad posture.

A different doctor later told me, “If there were something seriously wrong, you would be in much worse shape.” This prolonged my not pushing for a satisfactory diagnosis. I was still working full-time and pursuing my master’s degree at Indiana University-Purdue University Indianapolis.

where he could either try to remove more of the tumor, risking permanent left-side paralysis, or he could stop, protecting more motor function but leaving more tumor in my brain. I elected to preserve more motor function.

I still had pretty significant motor impairment on the left side of my body and went directly to inpatient rehab for intensive therapy.

July 2016 In June, I received an official diagnosis of glioblastoma. The following month, I was discharged from inpatient rehab and started daily radiation and chemotherapy. I had to take incompletes in three classes and couldn’t finish my master’s degree, but I was open with my professors about my treatment, and they granted me extensions.

May 2016

October 2016

My seizures increased in frequency and duration.

A very severe one on my commute home caused complete left-side paralysis, and I lost some vision.

I managed to steer myself into a gas station and made a doctor’s appointment for later that week.

My doctor was giving me a neurological exam when she said, “We need to get you in an MRI today.” The radiologist’s report revealed a 71-millimeter mass in my right parietal lobe.

We made an appointment with a neurosurgeon, who said, “I can’t believe the person I’m talking to is the same person I saw in those scans.” I was really high-functioning, given the size and location of my tumor.

We scheduled awake brain surgery for May 26.

Keeping me awake helped ensure I was responsive to commands, to minimize damage to healthy tissue. Eventually, my surgeon reached a point

Daily therapy became monthly chemotherapy.

The standard treatment protocol for glioblastoma is six months of chemo cycles; I did 11 months altogether, with regular MRIs for monitoring.

I was studying the philosophy of science, so I wanted to know more about the theories behind what was happening with my body. I started my blog, Glioblastology, to write about what I learned.

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March 2017 Our family had moved in with my parents for extra support. I was posting on the blog and active on social media, which led to my first public address at a local community center. I talked about relatable experiences, like my kids seeing me in the hospital and our doctor hugging my wife, Whitney, and me when she gave us the MRI report.

The success of my talk made me think I could

(SNAPSHOTS) COURTESY OF ADAM HAYDEN; (PAPER PIECES) ISTOCK

December 2014

From left: Adam Hayden with his son Isaac; receiving radiation therapy; and with his wife, Whitney, at the 2018 Head to the Hill lobby day

contribute to something bigger than me. I looked for a place where my research background intersected with patient advocacy, and the National Brain Tumor Society (NBTS) resonated with me.

May 2017

Whitney and I attended the annual NBTS Head to the Hill event in Washington, DC, where members of the brain tumor community meet with our congressional representatives. Whitney quickly learned the importance of her voice as a caregiver.

We’ve been married for nine years and have three kids—even in perfect health, that’s a lot of stress.

Our care partners face an added burden that’s important to recognize.

August 2017 I finished my last chemo cycle and moved from active treatment to MRIs every eight weeks, later extended to every 12 weeks. A year after my planned graduation, I earned my master’s degree.

September 2017

Liz Salmi and Bethany Kwan started the Brain Cancer Quality of Life Collaborative. I wrote a letter supporting Liz’s grant application, and Whitney joined as a care partner stakeholder. (See “Taking the Lead,” page 22.) In December, NBTS invited me to a research roundtable with the Food and Drug Administration to discuss early clinical trials. The following month, my university awarded me the distinguished alumni award for my advocacy work.

Glioblastoma multiforme is the most common and deadliest type of brain cancer in adults. Brain tumors are usually difficult to treat, as many drugs cannot cross the blood-brain barrier to reach the tumor. In some cases, chemotherapy may be administered directly into the brain. Genetic testing can show whether a brain tumor has mutations that make it susceptible to targeted therapies, such as Vitrakvi (larotrectinib). Palliative care, which aims to reduce symptoms and improve quality of life, is an important component of care for many people with brain cancer.

April 2018

I was accepted into the American Association for Cancer Research’s Scientist<—>Survivor program.

I also attended Stanford’s Medicine X program and gave a presentation on patient storytelling. I’m comfortable being a communicator—I think this is why I was drawn to advocacy.

August 2018 Before our oldest son, Isaac, started first grade, we asked the school to adjust his bus stop to be easier for me to access. That’s life with a serious illness: Everything is completely different and everything is completely the same.

October 2018

I gave a talk at the Indiana University School of Medicine Hospice and Palliative Medicine program and later spoke to a bioethics class for senior medical students. Whitney and I have taken a proactive approach to putting end-of-life affairs in order and working with palliative care. Having some plans in place has given us peace of mind.

February 2019

For the past six months, I’ve been a moderator for the Brain Tumor Social Media monthly Twitter chat. The personal connections I’ve made through social media and my blog make me feel like I’m really having an impact. ■

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BECOMING ADVOCATE Rick George credits his spiritual life—and a little help from his friends—with seeing him Florence Kurttila brings a patient’s through multiple health crises, insights toincluding the world of colon cancer research. liver cancer.

BY ROBIN WARSHAW

I

T HAD BEEN EXACTLY FIVE YEARS SINCE FLORENCE Kurttila of Citrus Heights, California, heard from her doctors in June 2002 that her colon cancer treatment had been successful. But instead of celebrating that milestone of living with no evidence of disease, she was sitting in the same chemotherapy suite where she had once received care.

This time, she was there to support her husband, Kurt, during his treatment for cancer of unknown origin.

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Florence Kurttila helps researchers and patients understand the impact of cancer treatment.

Her husband’s cancer was aggressive, and Kurttila was angry that his oncologist seemed to offer little help.

She asked questions on Kurt’s behalf that she hadn’t known to ask for herself when she was diagnosed. “At his first oncology appointment, I asked about clinical trials.

I asked about drugs,” Kurttila says. “I kept getting this blank stare [from the doctor] like, ‘No, you don’t want to do that.’ I said, ‘Oh, yes, I do. He’s my husband. I want him to live.’”

Although the doctor did finally agree to treat him with chemotherapy, Kurt’s treatment wasn’t successful, and he died not long after his diagnosis.

As she struggled with her anger and sadness, Kurttila received an email from a colon cancer organization about an upcoming conference in Washington, DC. Attendees would go to Capitol Hill to speak with congressional representatives about colorectal cancer and to advocate for more research funding.

Kurttila wanted to become active in advocacy but didn’t know how to start. She decided to attend and find out. On the plane, she began to worry. “I kept thinking, I’m going to this conference where I don’t know a soul.

It’s about colorectal cancer. I don’t have a husband to come home to—why am I doing this?” she recalls. “It was kind of emotional and scary.”

But the meeting turned out to be a great experience.

Kurttila met others who were passionate about colon cancer advocacy and supportive of her efforts. When she

returned home, she began actively supporting the cause in various ways, from answering patients’ questions and talking with groups to writing online posts.

Soon Kurttila was participating on panels at medical conferences. She admits to doubting whether she was qualified to speak on a panel with physicians and other health care providers, but organizers encouraged her.

“You’re the patient; you are qualified,” they said.

For nearly two decades since, Kurttila has harnessed her own experience not only to help fellow patients but also to guide cancer researchers in providing better care.

FROM TREATMENT TO SURVIVORSHIP Before her colon cancer diagnosis in 2001, Kurttila and her husband went for long walks around their neighborhood every night. One evening she felt unusually winded after their stroll and had a pain in her side. The pain became much worse overnight. She had an X-ray, but it showed nothing problematic.

One week later, though, she watched as a CT scan revealed a large white blotch in her abdomen. She had taken medical classes and worked at a medical company, so she knew the blotch didn’t belong there. “This thing was huge and it looked awful. It was invading other parts of my abdomen,” she says.

A biopsy showed that she had colon cancer. “It was just such a shock,” Kurttila says. She had no family history of the disease. She called the American Cancer Society

Colorectal cancer includes colon cancer, which affects the large intestine, and rectal cancer, which arises in the rectum (the final part of the intestine before the anus).

More than 101,400 people will be diagnosed with colorectal cancer this year, according to the American Cancer Society. It is the third leading cause of cancer-related death in the United States, but mortality is

declining, in part thanks to screening that can detect precancerous growths when they are easier to treat.

Early-stage colorectal cancer is typically treated with surgery, which removes growths known as polyps, localized tumors and sometimes part of the colon or rectum. Less than 10 percent of colorectal cancer patients will need a stoma to eliminate waste (see sidebar).

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Radiation therapy may be used before or after surgery.

Many people will undergo chemotherapy, either to eliminate any cancer that remains after surgery or to shrink more advanced tumors.

Medications for colorectal cancer include fluorouracil with leucovorin (folinic acid), capecitabine (Xeloda), irinotecan (Camptosar) and oxaliplatin (Eloxatin). These are often

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COLORECTAL CANCER BASICS

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from her hospital bed after the biopsy and asked for information about colon cancer. As she was wheeled into a five-hour surgery the next day, her brother in New York—who was being treated for lung cancer at the same time—talked to her by phone, offering encouragement and support.

Kurttila’s colon was cut to take out the large tumor. The surgeon was able to sew the ends of the cut pieces together, so she didn’t need a permanent ostomy, which collects waste in an external bag (see sidebar, page 20). Eleven lymph nodes were also removed and were found to have no evidence of cancer. Because the tumor was large but had not spread, she was told her disease was between Stage II and Stage III. During her 11-day hospital recovery, Kurttila was allowed only intravenous nutrition and broth. “They wouldn’t let me out until I had a bowel movement,” she says. “That takes time when you don’t eat anything and don’t move.”

Kurttila’s oncologist thought chemotherapy was unnecessary and radiation would be too risky for her other organs.

“He was very flippant. He said, ‘We got your cancer,’” as if that ended the discussion, she recalls. But she wanted to take every measure possible to prevent recurrence and switched to another oncologist who approved standard chemotherapy with fluorouracil and leucovorin.

Now, 18 years after her treatment, Kurttila recalls the long-term side effects no one talked about in advance: Her

used in combination regimens with names like FOLFOX (folinic acid, fluorouracil and oxaliplatin) or CAPOX (capecitabine and oxaliplatin).

People with more advanced disease may be treated with targeted therapies that work against cancer with specific genetic mutations. These include the EGFR inhibitors Erbitux (cetuximab) and panitumumab (Vectibix) and the VEGFR inhibitors Avastin (bevacizumab) and Cyramza

skin became dry, her teeth became brittle and she developed painful neuropathy in her hands. Although she didn’t need a permanent ostomy, she has had trouble with bowel movements. Now 66, she shares her experiences with other patients so they can be more prepared about what to expect than she was.

INCREASING ADVOCACY Kurttila’s involvement in colon cancer advocacy grew over the years. She connected with other patients and families, doctors and researchers and received training through organizations including Fight Colorectal Cancer and the Research Advocacy Network. She’s helped some people find clinical trials that might be right for them.

Since retiring from her job as a human resources professional in April 2018, Kurttila has become even more active. She travels around the country sharing information at talks and on panels and helps review research grants.

She serves on the gastrointestinal committee of the SWOG Cancer Research Network and the patient advisory committee for CancerLinQ (a project of the American Society of Clinical Oncology), and she has been a grant reviewer for the Department of Defense.

“You don’t have to be a medical professional to take part,” Kurttila says. What’s important is understanding the impact of treatments or research approaches on the patient—which is what advocates with experience as patients do so well.

(ramucirumab). Immunotherapy using the checkpoint blockers Keytruda (pembrolizumab) or Opdivo (nivolumab) may be an option for some people. Genetic testing of tumors can help determine which drugs are likely to work. Many clinical trials are currently under way to test new treatment approaches for colorectal cancer.

—Liz Highleyman

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“YOU DON’T HAVE TO BE A MEDICAL PROFESSIONAL— WHAT’S IMPORTANT IS UNDERSTANDING THE IMPACT OF TREATMENTS ON THE PATIENT.” Not only has Kurtilla seen the science of treating cancer change a lot since she was diagnosed, but she also sees more opportunities these days for patient advocates to become involved. “Now, in professional meetings, we’re called on to give our input in front of the whole group,” she says. “Before, it was, ‘Just attend and listen.’”

Cancer organizations and research centers also offer more training for advocates than they once did. Many research grants now require that patient advocates be included in the application process, Kurttila notes. As a result, advocates today may partner with cancer experts in reviewing grants and preparing conference posters and journal manuscripts—“a lot of things we were never involved in before,” she says.

Kurttila advises others who are interested in becoming advocates in any area—research, patient concerns or legislation—to apply for conference scholarships. These stipends help cover expenses for attending medical meetings, learning more and taking an active role.

“There’s a lot of advocacy going on that you can participate in,” she says. ■

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LIVING WELL WITH KIMBERLY HOLIDAY-COLEMAN ADMITS SHE felt embarrassed by her friend “Fred” when they first met, but now she’s comfortable going everywhere together.

Fred is her ostomy, an abdominal opening created by surgery that diverts bodily waste into an external bag or pouch. Holiday-Coleman has a colostomy, formed from the large intestine. Some people have an ileostomy, created from the small intestine, or a urostomy to pass urine from the kidneys. Ostomies may be needed after surgery for colorectal cancer or other conditions.

Holiday-Coleman received her colostomy in 2015, at age 47, when she had surgery for Stage II rectal cancer. The ostomy nurse suggested she give it a name to help her adjust. Now, as an experienced ostomate (as a person with an ostomy is called), she can talk—and even joke—about Fred.

“It’s a part of me,” says Holiday-Coleman, now 50, who lives in Lexington, Kentucky. “I’m so thankful for my ostomy because it allows me to be here with my family.”

The ostomy opening, or stoma, is reddish and round or oval. Liquid or soft stool drains through it into a pouch, which is held in place by an adhesive seal or ring. Pouching systems are odor-proof, and deodorizers can curb odors when emptying contents into a toilet.

Some people need only a temporary ostomy to let the bowel rest for several weeks or longer, before another operation is done to restore normal excretion. Others require a permanent ostomy because of the extent of their surgery. Less than 10 percent of colorectal cancer patients have permanent ostomies, according to the Colorectal Cancer Alliance.

Wound, ostomy and continence nurses (WOCNs) are trained to determine the best location for the stoma and to prepare patients for living with an ostomy. The American Society of Colon and Rectal Surgeons recommends

COURTESY OF KIMBERLY HOLIDAY-COLEMAN

AN OSTOMY that patients meet with an ostomy nurse before surgery for stoma site marking.

While surgeons look at the abdomen only when the patient is lying down, “patients live sitting, standing, moving and walking,” which affects stoma function, says Joanna Burgess, BSN, RN, CWOCN, advocacy chairperson of the United Ostomy Associations of America (UOAA) and an ostomy nurse in Cary, North Carolina. Skin folds, scars and other physical factors also affect results. “Ostomy nurses help the surgeon decide where to place the stoma— where the patient can see it best and where they can navigate it best,” says Burgess, who herself has a urostomy and colostomy resulting from treatment for childhood bladder cancer.

After surgery, patients and their caregivers should be taught about the types of pouching systems, how to empty and change bags and how to describe problems to their medical team. Pouch leaks and skin irritation are not normal, so speak to an ostomy nurse if these arise, Burgess says. Regular appointments with an ostomy nurse or at an outpatient ostomy clinic can help ensure ongoing success.

Before leaving the hospital, it is important to talk with a nutritionist about eating as an ostomate. At home, it is best to

Kimberly HolidayColeman

By Robin Warshaw cook vegetables and fruits rather than eating them raw, to use ground meat and to slowly add new foods to the diet. A food diary is a good way to record how the ostomy functions after consuming specific foods or drinks.

“My biggest challenge is finding what I can eat, what Fred can tolerate and what he can’t,” says Holiday-Coleman.

She juices her vegetables, eats berries but not hard fruit and does OK with chicken, but she can’t eat popcorn, which she once loved.

New ostomates often ask whether to tell people about their ostomy (it’s the patient’s choice), whether they can return to work (yes, unless it involves heavy lifting), what to wear (anything they want), whether they can shower, bathe or swim (yes to all) and whether travel, exercise, dating and sex are still possible (yes to all those too).

Finding practical help and emotional support is important.

UOAA has about 300 affiliated ostomy support groups in the United States for ostomates and their caregivers. There are also ostomate groups on social media and at many hospitals and outpatient ostomy clinics.

During her recovery, HolidayColeman began walking slowly.

She has now taken part in a muddy obstacle race and, with her family, in a 5K for UOAA. A former model, she traveled to Australia and appeared in a fashion show for people with disabilities.

She also discovered burlesque dancing and competed in a contest for the first time—and won. During the performance, she took off her clothes because “that’s part of the art,” she says.

When the audience saw Fred with the ostomy bag she had decorated for the occasion, the crowd was silent at first but then cheered.

“People came up to me after and talked about their experiences with colostomy,” she says.

“I realized that I had something to say that was important for people with ostomies and who have gone through cancer to hear—that we can still be sexy, feminine and active.”

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A new breed of patient advocate is reshaping the future of cancer research.

BY BRYN NELSON LIZ SALMI AND ADAM HAYDEN FOUND EACH other on Twitter and bonded over the fact that both had been in punk rock bands and both had been diagnosed with brain cancer.

On Facebook, biochemist Corrie Painter met an instant friend who had been diagnosed with rare angiosarcoma of the breast—just like her.

And over drinks at a national summit for cancer survivors, former rocket scientist Janet Freeman-Daily connected with four other lung cancer patients who shared the same uncommon tumor gene mutation.

Finding others who share a specific diagnosis can be an invaluable source of support and information. Beyond that, these allies went on to launch ambitious efforts that could help reshape the future of cancer research.

Patient-led research is growing in both size and sophistication. What’s more, these projects are attracting the attention of academic institutions and funding agencies with their focus on largely unaddressed scientific questions and unmet medical needs.

Diving into the research was “so scary but also so exciting,” says Salmi, who helped start a project that could lead to better care for people with brain cancer.

The new patient advocates are going beyond Twitter and Facebook. They’re meeting leading researchers at major scientific conferences as well as patient-centered gatherings, like the Stanford Medicine X|ED Conference and the LUNGevity Foundation’s HOPE Summit.

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ADVOCATES FIND THEIR VOICE

Two main trends have fueled the growth of these research partnerships, according to Aime Franco, PhD, associate professor of physiology and biophysics at the University of Arkansas for Medical Sciences in Little Rock. First, the internet has enabled patients to find one another more easily, even those with exceedingly rare cancers. Second, people living with cancer are now able to quickly access detailed scientific information.

“Patient advocates have become so much more motivated but also more educated about their own disease, and I think that’s really pushed the needle forward,” says Franco, a thyroid cancer survivor.

Patients can help drive research questions and suggest new lines of inquiry because they understand the day-to-day realities of living with cancer. They can also point out where existing research isn’t well aligned with priorities such as quality of life.

Collaborating researchers bring their scientific training and understanding of how to ask and answer questions in a laboratory or clinic. “They understand the limitations of what can or can’t be done,” Franco says.

Researchers increasingly recognize that understanding how cancer develops in individual patients will be critical for advancing the science, offering a compelling rationale for closer interaction between the two communities.

“When you involve patients in the research from the get-go, you not only end up asking the right questions but also asking them in a way that the community understands,” says Stacey Tinianov, who leads outreach and engagement for Count Me In, a nonprofit that brings patients and researchers together. “When people are part of the process, they know they can trust the process.”

A NEW MODEL The group formed by Janet Freeman-Daily and fellow lung cancer patients, dubbed the ROS1ders after the mutated ROS1 gene responsible for their shared malignancy, is already helping to expand the scientific tool kit.

In 2011, the retired aerospace engineer from suburban Seattle, now 62, was diagnosed with advanced non-smallcell lung cancer in her left lung. Despite chemotherapy and radiation, the cancer eventually spread to her right lung, and a genetic test revealed that her cancer cells had an extensive ROS1 gene rearrangement. She enrolled in a clinical trial in late 2012 to test the then-experimental ROS1-targeted drug Xalkori (crizotinib). “I’ve had no evidence of disease ever since,” she says.

After they met during the 2015 HOPE Summit, FreemanDaily and other ROS1ders decided to form a Facebook group that has since grown to include more than 300 patients in 22 countries. “It was a great comfort for us to talk to other people who were experiencing the same things we were,” she says.

But that wasn’t enough. “We were all on crizotinib; there was no next treatment. We all had kids at home, and we knew that everybody on this drug eventually progresses,” Freeman-Daily says. “We asked, ‘What can we do to accelerate research?’”

And so the ROS1ders became one of the first oncogenespecific patient groups to seek out research partnerships— a move that others soon followed. Representatives from similar groups that sprung up around other gene mutations now meet regularly to share best practices.

In 2017, the ROS1ders launched the ROS1 Cancer Model Project in partnership with researchers, including Robert Doebele, MD, PhD, associate professor of medical oncology at the University of Colorado at Denver. To date, Doebele says, the collaboration has allowed his lab to collect donated tissue and fluid samples from 10 patient volunteers and to grow four much-needed ROS1-driven cancer cell lines for his research.

Most of those cell lines are from people who have stopped responding to Xalkori. By sequencing the cells’ genome, researchers can determine which secondary mutations might have helped the cancer develop resistance, offering potential new targets for treatment. All the resulting data will be made publicly available.

While in Denver on a recent trip, Freeman-Daily visited Doebele’s lab to see the new cancer cell lines for herself.

“I’m a science geek, so it was really cool,” she says. “I think the researchers appreciate knowing that they’re making a difference for real people.”

JOINING THE BAND Liz Salmi and Adam Hayden have pursued a different kind of patient-led research initiative focused on palliative care, which aims to provide symptom relief and improve quality of life for people with late-stage disease.

After Hayden, 36, was diagnosed with glioblastoma, an aggressive type of brain cancer, in 2016, he completed his master’s degree in philosophy while undergoing treatment (see Diary, page 14). He learned everything he could about his disease and carved out a niche as a blogger, describing both his personal battle and the science behind his illness.

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(HAYDEN) COURTESY OF ADAM HAYDEN; (PAINTER) COURTESY OF BROAD INSTITUTE; (SALMI) COURTESY OF LIZ SALMI; (FREEMAN-DAILY) COURTESY OF JANET FREEMAN-DAILY

proving patients’ lives Salmi, 39, who lives in through palliative care.

Sacramento with her husOne research priority is band, was diagnosed with designing a multisite study a related form of brain to examine the benefits of cancer called astrocytoma offering such care to peoin 2008. A digital commuple with brain cancer imnications specialist and selfmediately after diagnosis. taught computer coder, she People living with is the senior strategist for brain cancer often face a outreach and communicaconstellation of challenges, tions for OpenNotes, a including epilepsy and research project housed at short-term memory loss.

Beth Israel Deaconess “Palliative care could Medical Center in Boston. help not only with pain The project is studying the management but also benefits of giving patients with psychosocial supfull access to their medical port and other unmet records and clinical notes. needs,” Hayden says.

Before her two brain The group’s other resurgeries, two years of Clockwise from top left: Adam Hayden; Corrie search priority is exploring chemotherapy and months Painter, PhD; Liz Salmi; Janet Freeman-Daily how best to educate docof learning how to walk tors and people living again, Salmi knew nothing about brain cancer or medical research. “It was never with cancer about palliative care and help them talk on my radar,” she recalls. But viewing and sharing her own about it more openly. “Educating one patient is only records on a blog for friends and family of cancer patients going to go so far,” Salmi says, but educating and training piqued her curiosity. She also began volunteering for on- neuro-oncologists could have a much larger and longerlasting impact. line patient communities and research advisory boards.

Salmi became the director of communications for the Coalition for Compassionate Care of California, a non- COUNT HER IN profit focused on palliative care education and advocacy. Corrie Painter, PhD, associate director of operations and She realized that many other people with cancer don’t scientific outreach for the Broad Institute Cancer Proeven know what palliative care is, much less how to ask gram in Cambridge, Massachusetts, was diagnosed with for it. She began attending scientific conferences and angiosarcoma in 2010, while pursuing a doctoral degree met Bethany Kwan, PhD, MSPH, a social psychologist in biochemistry. At the time, she didn’t think she would at the University of Colorado whose own mother had live more than three to six months.

Too few people had been diagnosed with the rare and died from glioblastoma without receiving proper palliaaggressive cancer—which results from the out-of-control tive care.

Together, Salmi, Kwan, Hayden and a band of like- growth of blood-vessel-derived cells—to help researchers minded supporters won a $50,000 grant from the Patient- develop useful data, tools or guidance.

“It was very challenging to be a scientist and know the Centered Outcomes Research Institute’s Pipeline to Proposal program. The initiative provides seed money to help stark reality that there was just nothing I could do to try patient communities form partnerships, formulate a scien- and make a change,” Painter says.

Then she stumbled upon a Facebook group for people tific agenda and build the infrastructure to ask research with angiosarcoma and found Lauren Ryan, another patient questions that are important to them.

In 2017, the newly funded Brain Cancer Quality of Life like her. “I can’t overemphasize the importance of having Collaborative took its first big steps toward its goal of im- a connection with somebody else who truly understands

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”WHEN PEOPLE ARE PART OF THE PROCESS, THEY KNOW THEY CAN TRUST THE PROCESS.“

what it’s like to walk in your shoes,” Painter says.

Together they started a nonprofit called Angiosarcoma Awareness. To date, the group has raised around $1 million for research into the orphan disease. “It’s really exciting to think that we’ve made a difference,” says Painter.

But that wasn’t enough. As a scientist, Painter realized that a few medical publications wouldn’t cure angiosarcoma on their own. Instead, she says, “I felt that to make an impact, we have to fundamentally change the system.”

An opportunity to do just that came in the form of Count Me In, a newly launched patient-led program backed by the Broad Institute and partner organizations.

As associate director since 2015, Painter has helped lead the charge to reinvent cancer research by working closely with patients throughout every phase of a study, from designing and naming it to shaping its survey questions to deciding how to release the data.

Starting with its initial effort, the Metastatic Breast Cancer Project, Count Me In aims to deliver high-quality, extensively annotated and freely available genetic and clinical data for all major cancers and many rare ones.

Along with its three other projects launched so far— the Metastatic Prostate Cancer Project, the Esophageal & Stomach Cancer Project and the Brain Cancer Project— Count Me In recently took a major step toward changing the future of angiosarcoma research by releasing data from the first 36 patients in its Angiosarcoma Project.

After completing an intake survey about their cancer experience, patient volunteers receive a consent form via email. They can opt in or out of allowing researchers to retrieve copies of their medical records—uploaded into an encrypted folder to protect privacy—and collect saliva, blood and leftover tumor biopsy tissue samples. The project’s researchers sequence DNA from the saliva samples, which provides a record of an individual’s germline genome, or entire set of inherited DNA. By comparison, DNA from a blood or tumor sample can reveal subsequent mutations that occur in evolving cancer cells.

So far, the Metastatic Breast Cancer Project has re-

leased three batches of detailed clinical and genetic information that include more than 200 samples from 130 patients, stripped of identifying details. Over the past year, the project website has logged more than 80,000 hits. At the 2018 San Antonio Breast Cancer Conference, Painter saw that multiple talks and posters included data from the project. “It was fascinating,” she says. “It is being used by the biomedical community.”

A NEW WAY FORWARD Amid the progress, one challenge has been protecting patient-led projects from the disruptive nature of cancer itself. “On the one hand, being driven by patients, we are very motivated, and we are putting a lot of time and effort into this. But we do get sick, and that gets in the way sometimes,” Freeman-Daily says.

Other obstacles include mistrust and researchers who fear being told how to do their jobs. The American Association for Cancer Research Scientist Survivor Program aims to forge partnerships and build trust among scientists, cancer survivors and patient advocates.

Each year, the program accepts about 40 applicants, who attend scientific symposia and special sessions at AACR meetings. “People go away with a lot of knowledge but also a lot of motivation,” says program chair Anna Barker, PhD. “It’s transformational—it creates a whole new advocate.”

As a highly motivated advocate, Salmi knows that her cancer is projected to eventually become glioblastoma, and it could be a long time before her group’s research project delivers any solid results. “That could take years, but someone needs to do it,” she says.

Maybe the palliative care questions they’re working to answer will someday benefit her. Maybe they will benefit Hayden or another friend or others yet to be diagnosed.

Already, though, Salmi has seen health care providers who have benefited from their participation in the project, learned to trust patients and begun to change how they approach palliative care as a result. It’s a start, and it makes her happy. ■

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YOUR TEAM

BY KURT ULLMAN

Ann Partridge MD, MPH

Survivorship What does a survivorship program do?

Survivorship programs focus on helping people get supportive care—both medical and psychosocial—that gets them through and beyond their cancer. We help with the prevention and management of late and longterm effects that can result from the cancer itself or from its treatment. We help you optimize your new normal.

What kinds of care do you provide?

We work with the whole health care system to address a patient’s needs. Some preparation for survivorship begins at diagnosis.

For example, studies show that smoking negatively affects cancer treatment, so we offer links to smoking cessation classes. We counsel people about exercise and weight management throughout treatment.

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Depending on the type of cancer and treatment, we may support maintaining fertility for people who haven’t yet started or want to add to a family. Our program brings in nurses for counseling, reproductive endocrinologists and others to try to preserve eggs, embryos and sperm. This has to be done early—if you don’t, you may find that necessary treatments have burned reproductive bridges.

COURTESY OF DANA-FARBER CANCER INSTITUTE

Ann Partridge, MD, MPH, is director of the Adult Survivorship Program at the Dana-Farber Cancer Institute in Boston.

While our work begins at diagnosis, most of it happens after someone has completed active treatment. Survivorship is where you go when you are no longer at high risk of recurrence or dying from your disease.

After acute treatment, we watch for late-onset concerns.

We have, at one stop, specialists such as nephrologists, endocrinologists, cardiologists and others skilled in managing the short-term and long-term effects of treatment, including radiation or chemotherapy. We also have sleep specialists who can help with insomnia.

We work with the patient to coordinate screenings and follow-up with other providers.

After a cancer diagnosis, some screening exams should be done more often. If a woman now knows that she has a genetic predisposition for breast cancer, for example, we remind her when it’s time for another mammogram.

pain control and similar interventions as well as helping individuals and their families transition to a death with dignity.

In general, the problems our patients face are often not directly related to their cancer itself but to their cancer treatment. We do some palliative care, such as relief for nerve pain that can be a side effect of medication. Overall, survivorship is more involved with helping people recover and adjust to their new normal.

How does what you do differ from hospice care?

If you have cancer, you will essentially go in one of two directions. One is being a long-term survivor living with risk of recurrence, potential long-term effects or a chronic disease. The other is shorter term and might entail entering hospice care.

The latter involves palliative care, which is more concerned with comfort measures for those living with active disease that will ultimately lead to death. The focus is more on

What are the most hopeful or inspiring aspects of your work?

The most important is building programs that are acceptable and accessible to our patients and their providers. We want people to take advantage of things that will help them—and help them help themselves.

An example is the sexual health program. Sex is important, but most people with cancer don’t view it as a priority.

Yet it can still have profound implications for them, their partners and the emotional well-being of both (see Basics,

page 12). When you’re able to help someone who otherwise would be having a very difficult time, that is very rewarding.

What challenges do you face in your work?

We face many medical and emotional challenges. Some we can address within the cancer center; others require matching people with services in the community.

Survivors may be anxious about the future and the possibility of recurrence. While most survivors

Survivorship is where you go when you are no longer at high risk of recurrence or dying from your disease. will not die from their cancer, there are still losses that need to be addressed. There may be profound scars that aren’t always physical.

I think survivorship is often neglected. Patients are focused on treating the cancer and the risk of cancer coming back. We need to empower people to ask about survivorship, to think about what we can provide and to get them as much care as they need. For many people, the bulk of the time following a cancer diagnosis will be spent as a survivor. ■

cancerhealth.com

SPRING 2019

CancerHealth 27

BY MEAVE GALLAGHER

Getting a Second Opinion WHEN YOU RECEIVE A CANCER DIAGNOSIS, YOUR doctor will usually suggest a treatment plan. Receiving so much information about such a serious health matter can be overwhelming. But don’t feel pressure to make a decision on the spot.

You are entitled to ask as many questions as you need to and to get clear answers—you want to be as informed as possible when it comes to your health. A good step before committing to a treatment plan is seeking a second opinion from a different medical provider.

Don’t worry about appearing rude or insulting your doctor. Getting a second opinion is common practice. It’s better to be open with the professionals you speak with.

Let them know who else you’re talking to and what each of them says. You can ask your first doctor to recommend someone else to talk to—preferably a specialist at an unrelated institution who may offer different approaches to testing, care and treatment. If the two doctors arrive at different diagnoses or suggest different plans, you may ask them to discuss their conclusions together.

Most insurance providers, including Medicare, will cover the cost of a second opinion in the case of a cancer diagnosis. If your first and second opinions are very different, a third opinion will usually be covered too.

Policies differ, however, so make sure to check with your insurance provider in advance.

Remember that getting a second opinion is not only normal but also recommended. Whether you’re diagnosed with one of the most common cancers or a rare one, advice from another medical professional can help you feel more confident and empowered to choose the best course of treatment for you. ■

28 CancerHealth SPRING 2019 cancerhealth.com

8 SECOND OPINION TIPS 1 You are the last word in your care.

Speak up if anyone on your medical team is pressuring you or making you feel rushed or afraid.

2 Ask your insurance provider about

coverage for a second opinion—and a third one, if needed.

3 If your diagnosing doctor can’t or won’t

offer a referral, you may find one at an academic medical center or through the National Cancer Institute.

4 Be clear that you’re seeking a second

opinion when you make an appointment with the new doctor.

5 When you go, bring your medical

records, including pathology or surgery reports and your diagnosing doctor’s proposed treatment plan.

6 If possible, bring a family member,

friend or caregiver to your appointment.

7 Discuss the second opinion with your

first doctor and see whether the two are willing to speak with each other.

8 Ask your medical or insurance provider

about getting guidance from an oncology social worker, who can help you find specialists and prepare for appointments.

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HOW TO

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GOOD STUFF

BY MEAVE GALLAGHER

FRESH AIR

Products that will put a spring in your step Stefani Schuetz was diagnosed with Stage II melanoma at age 25. Determined to keep up her active outdoor lifestyle while protecting herself from the sun, she developed Tri Sirena, a line of athletic wear that’s stylish, comfortable and physician-approved.

Her Sapphire Summer UPF 50 Leggings ($90, sizes XS to 2XL) are moisturewicking and block 98 percent of UV rays.

Julie Yip-Williams started a blog after being diagnosed with metastatic colon cancer in 2013.

Nearly five years of her writing— including previously unpublished work—is collected in The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After ($27, Random House). Here, Yip-Williams, who died in 2018 at age 42, recounts her physical and emotional struggles and helps her family and friends prepare for life without her.

A recent study showed that SPF 100 is much more effective in protecting against sunburn than SPF 50, so it’s time to up your sunblock game. CVS Ultra Sheer Broad Spectrum Sunscreen Lotion SPF 100 ($9.99, 3 oz.), which comes recommended by the Skin Cancer Foundation, is dermatologist-tested and cruelty-free.

Its waterand sweatresistant formula absorbs quickly, so you can easily reapply.

Make daily sunscreen a habit today and don’t feel the burn!

An ostomy appliance isn’t a particularly convenient accessory. But with a Stealth Belt Pro ($99, sizes 26 to 46), you can carry your pouch with ease. With its moisture-wicking fabric, a zippered compartment and a double-locking closure, the Stealth Belt Pro provides a lightweight way to discreetly secure your ostomy device.

Available in custom sizes and colors and in neoprene for more intense activities and water sports.

Working in hospitals and cancer centers, aesthetician Delilah Matos uses the products in her skin care line, Beautiful Fighter, to help people undergoing cancer treatment improve their skin health. Reclaim Hydrating Mist ($23, 4 oz.) for face and body has aloe, jojoba oil and vitamin E to moisturize and protect the skin.

Make a quiet space for yourself with CozyPhones Wireless Contour Series Sleep Headphones ($29.99). The thin speakers lie flat against your ears, the band sits comfortably around your head and the wireless design means you won’t wake up tangled in cords.

The band also is wide enough to use as a sleep mask. Listen to your favorite podcast, audiobook, music or guided meditation in comfort anywhere.

30 CancerHealth SPRING 2019 cancerhealth.com

BY MEAVE GALLAGHER

RESOURCES

Survivor Resources HEARING “NO EVIDENCE OF DISEASE” CAN BRING RELIEF, BUT physical and emotional side effects often linger. Here are some groups and programs to help ease the transition from treatment to survivorship. Many can help throughout your cancer journey.

CANCERCARE cancercare.org CancerCare hosts online and in-person survivor support groups, and its resource library includes cancer educational workshops. Call 800-813-HOPE for free short-term support from an oncology social worker.

CANCER SURVIVORS’ FUND cancersurvivorsfund.org Young adult cancer survivors can apply to CSF for financial assistance for prosthetic limbs and school tuition.

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CANCER SURVIVORS NETWORK csn.cancer.org The American Cancer Society created this virtual peer support community of cancer survivors, families and friends. Participate in live chats and find in-person support groups.

JOURNEY FORWARD journeyforward.org A collaboration of nonprofit and for-profit organizations aiming to improve survivorship care, Journey Forward’s Survivorship Library offers information on coping, wellness and more.

LIVESTRONG AT THE YMCA livestrong.org/ymca-search A physical activity program

promoting fitness and health after cancer treatment, this partnership provides low- or no-cost exercise regimens from certified fitness instructors.

M POWERMENT mancancer.org M Powerment was founded to empower men to thrive after cancer. It offers resources, a free online course and in-person workshops around the country.

NATIONAL CANCER SURVIVORS DAY FOUNDATION ncsd.org The first Sunday in June, National Cancer Survivors Day, is a chance for everyone who has experienced cancer to connect and raise awareness of the challenges of living with and past cancer. Organize an event or find one near you.

NATIONAL COALITION FOR CANCER SURVIVORSHIP canceradvocacy.org NCCS’s Cancer Survival Toolbox is a free audio program covering issues such as communicating and standing up for your rights.

NATIONAL COMPREHENSIVE CANCER NETWORK nccn.org NCCN’s library of survivorship

resources includes information on planning follow-up care, managing cancer as a chronic condition, and nutrition and exercise. Medical professionals can access its comprehensive Guidelines for Survivorship.

OFFICE OF CANCER SURVIVORSHIP cancercontrol.cancer.gov/ocs Part of the National Cancer Institute, the OCS has tips on health and well-being after cancer, how to get involved in the community and survivor stories in its resource library.

Check out its Facing Forward series on posttreatment living.

ONCOLIFE oncolife.oncolink.org OncoLife’s Survivorship Care Plan is free for adult cancer survivors and their care providers.

It gives personalized guidance on overcoming problems that can arise after treatment.

TRUE NORTH TREKS truenorthtreks.org True North Treks offers young adult survivors and those living with cancer—and their caregivers— a chance to connect with nature and one another on outdoor trips for varying fitness levels. It also has a long-term survivorship support system for alumni.

cancerhealth.com

SPRING 2019

CancerHealth 31

LIFE WITH CANCER

BY JEN HODSON

So You’re OK Now?

Diagnosed with early-stage breast cancer in 2016 at age 29, Jen Hodson turned to social media to cope. She is creator of the Rogue Boob blog, featured on CancerHealth.com.

MIND: • PTSD • Panic and anxiety attacks • Inability to sleep • Constant fear • Memory loss • Reduction in sharpness (chemo brain) • Inability to concentrate or multitask • Mood changes • Loss of self-confidence BODY: • Side effects of medications (weight gain, bloating) • Various scars • Phantom itching • Nerve pain • Reduced flexibility • Achy joints • Severe lethargy and chronic fatigue • Complete overhaul of sexual function SOUL: • Isolation and detachment • Fear of connecting (How do I explain this to a partner?)

• Loss of identity (Who am I now?)

• Loneliness (Who can understand me?)

• Compassion fatigue on the part of friends and family This list is depressing. But it is what it is. Every day I strive to work on solutions, possibilities, motivating chats with myself— to get through these difficulties

32 CancerHealth SPRING 2019 cancerhealth.com

Jen Hodson

and try to feel “OK” again. And there is so much promise that I am healing more and more every day. In fact, I trained for and completed the 2018 New York City Marathon, and I plan to run another one this year. But just because I’m in remission and I look more like I used to, I don’t necessarily know if I’m actually doing all right.

So my advice would be: Don’t ask me if I’m OK now. Just ask me how I’m doing. Ask me how I’m feeling. I promise to keep it short and sweet. And I promise to be honest. Because if you don’t want to hear it, you shouldn’t have asked. ■

COURTESY OF JEN HODSON

I GET ASKED THE WHOLE “So you’re OK now?” question a lot. And I don’t blame people for asking. We’re a big-picture society. We want the abridged version, the snapshot, the 60-second update, and then we want to move on.

“How’s the cancer?” “Well, I’m in remission but…” “Fantastic, that’s great news, so glad to hear” and so on and so forth until we land on a more pleasant conversational topic.

I’m more than a year and a half out from treatment and had my two-year diagnosiversary this past November. My hair has grown back to a socially acceptable length, and my surgeries are (for the most part) over with. No real physical remnants of treatment can be seen— unless you’re looking for them, and then you might spot some peculiar scars.

But I don’t really know if I’m OK. Sometimes I think I am; sometimes I think I’m falling into a pit of despair that I can’t get out of.

A lot goes into an early-stage cancer diagnosis, and I’m not sure the world recognizes the amount of recovery needed.

So I’d like to outline some of the difficulties I face while in recovery. I’m going to break it down into the three categories symbolized in the tattoo on my arm: mind, body and soul.

SURVEY

ADVOCACY Advocacy can be an empowering response to living with cancer. This includes self-advocacy to get the care and support you need, social advocacy to raise awareness and political advocacy to make treatment accessible for all. Cancer Health wants to know about your experience with advocacy.

1

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

2

How do you advocate for your care and treatment? (Check all that apply.) ❑ Learn about treatment options and their risks and benefits ❑ Ask my medical team to explain anything I don’t understand ❑ Seek a second opinion ❑ Other (please specify): ________________ ❑ None of the above

3

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4

How do you advocate for support?

(Check all that apply.) ❑ Tell friends and family members what I need ❑ Ask friends and family for specific help, like transportation or childcare ❑ Ask my medical team or social worker for recommendations ❑ Other (please specify): ________________ ❑ None of the above Do you participate in any cancer support or advocacy groups? (Check all that apply.) ❑ In-person support groups that deal with the challenges of living with cancer In-person social or activity groups for ❑ people with cancer and their loved ones ❑ In-person political or advocacy groups ❑ Online or social media support groups ❑ Online or social media advocacy groups ❑ I don’t participate in any cancer groups.

5

Do you use social media to raise awareness about cancer? ❑ Yes ❑ No

6

Have you provided information or support to another person living with cancer? ❑ Yes ❑ No

7

Have you ever contacted a government representative regarding cancer-related issues? ❑ Yes ❑ No

8

Have you ever donated money to a cancer organization or charity? ❑ Yes ❑ No

9

Have you ever done a walkathon or other event to raise money for cancer? ❑ Yes ❑ No

10 If you don’t have cancer yourself, have you been a caregiver or support person for someone who does? ❑ Yes ❑ No 11 Do you consider yourself an advocate? ❑ Yes ❑ No 12 What year were you born? __ __ __ __ 13 What is your gender? ❑ Male ❑ Female ❑ Transgender ❑ Other 14 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): ________________ 15 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 #5, 212 West 35th Street, 8th Floor, New York, NY 10001

Support the brave and bold scientists working to prevent or cure all forms of cancer.

100% of donations go to cancer research Learn more at damonrunyon.org CAN508014.pgs 02.22.2019 14:45

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