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The Stigma of Lung Cancer
Facing an Unexpected Diagnosis Expanding Access to New Therapies Staying Fit During Treatment Is a Clinical Trial Right for You?
Six Years Cancer-Free After CAR-T
Keeping Your Hair With Scalp Cooling Laura Greco
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CONTENTS
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Cancer Health.com Cancer Health Basics
Stephanie Wells kept her hair with scalp cooling during chemotherapy.
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
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24 SPARE YOUR HAIR DURING CHEMO Scalp cooling can prevent hair loss. BY LIZ HIGHLEYMAN 3 From the Editor Access for all
Check out our selection of blogs by people living with cancer, advocates and the Cancer Health editors. cancerhealth.com/blogs
4 Cancer News Options for advanced breast cancer | prostate cancer guidelines | falling cancer deaths | benefits of exercise | acupuncture for pain | lung cancer breakthroughs from AACR | new treatment target
Cancer Health Digital
8 Basics Is a clinical trial right for you? | What is multiple myeloma?
Go to cancerhealth.com to view the current issue and the entire Smart + Strong digital library.
12 Voices Karuna Jaggar: Right to Try legislation offers false hope | Kelly Shanahan: clinical trials need to broaden eligibility criteria
ECSTATIC
HEALING Dancing through cancer with Dr. Deborah Cohan
BY CASEY HALTER | PHOTOGRAPHY BY WINNI WINTERMEYER
OUR YEARS AGO, DEBORAH COHAN, MD, a physician and obstetrician-gynecologist at Zuckerberg San Francisco General Hospital, went viral on the internet in the midst of her battle with breast cancer. But her story isn’t the typical tale of fear, reckoning and recovery that cancer patients are often primed for when they receive their diagnosis.
Deborah Cohan, MD, made her cancer journey a celebration of life.
CREDIT
F
CREDIT
COVER: SARAH SMITH; (WELLS) ANGELA DECENZO; (“CANCER,” IV TREATMENT AND TYPEWRITER) ISTOCK
Cancer Health Blogs
16 OUT OF THE BLUE Laura Greco faced an unexpected lung cancer diagnosis and became an advocate. BY ROBIN WARSHAW Plus: The stigma of lung cancer
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MONTH 2017
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14 Diary Justin Birckbichler on testicular
cancer and finding his voice 30 Your Team Megan Pienta explains how financial navigators can help you pay for care. 32 How To Keeping fit during treatment 34 Good Stuff Products to help you look and feel your best 35 Resources Aid for expenses big and small 36 Life With Cancer Emily Whitehead: Six years cancerfree after CAR-T therapy 37 Survey How do you manage the financial challenges of care?
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CancerHealth 1
To end disease tomorrow, begin with Trials Today. Researchers across the country are getting closer and closer to unlocking the science that can lead to cures. But they need you. Health care can’t advance unless people like you volunteer to participate in trials. That’s why there’s ResearchMatch Trials Today, a new way to search for clinical trials at the non-profit ResearchMatch.org. When you use ResearchMatch to find a trial, you just might help a researcher find a cure.
Trials Today at researchmatch.org
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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, 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. CHIEF TECHNOLOGY OFFICER Christian Evans VICE PRESIDENT, INTEGRATED SALES Diane Anderson INTEGRATED ADVERTISING MANAGER Jonathan Gaskell
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INTEGRATED ADVERTISING COORDINATOR 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 CONTROLLER Joel Kaplan Issue No. 2. Copyright © 2018 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. BPA Worldwide application March 2018. Smart + Strong® and Cancer Health™ are registered trademarks of CDM Publishing, LLC.
Access for All Today’s remarkable treatment breakthroughs can feel like a hollow achievement if they’re not available to many people living with cancer. Few things are as frustrating as knowing that a promising new therapy is out there and you can’t take advantage of it. Barriers to access come in many forms. Sometimes scientific advances don’t seem to move fast enough for people with life-threatening illnesses. In the 1980s and ’90s, AIDS activists helped speed up drug development and broaden access to experimental therapies. Today, Right to Try legislation aims to increase access by bypassing the Food and Drug Administration. But as Karuna Jaggar argues on page 12, these laws may offer little more than false hope. Joining a clinical trial can be a good way to gain access to experimental therapies prior to approval. As Kelly Shanahan, MD, explains on page 13, trial entry criteria need to be broadened to include sicker patients and participants who reflect the full diversity of the population that will use a new drug. Stigma, a well-known barrier for people living with HIV and hepatitis C, can also rear its head in the cancer arena. As described in our feature on page 16, the idea that lung cancer is a “self-inflicted” illness has repercussions for all lung cancer patients, whether they’re current smokers, former smokers or never smoked. Finally, a major barrier to access for people with cancer is the high cost of
new therapies. On page 30, financial navigator Megan Pienta explains how she helps people pay for cancer treatment. Equitable access is also important for related care such as scalp cooling to prevent hair loss. Efforts like those of HairToStay, described on page 29, can help level the playing field. But ultimately, the rising cost of health care must be addressed at the national level. This will be a big issue in upcoming elections as patients, providers, payers and politicians struggle to find innovative political solutions that match the innovations we’ve seen in medical science.
LIZ HIGHLEYMAN Editor-in-Chief lizh@cancerhealth.com Twitter: @LizCancerHealth
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CancerHealth 3
BY LIZ HIGHLEYMAN
New Options for Advanced Breast Cancer New treatment options are here for people with breast cancer that has spread elsewhere in the body, a process known as metastasis. A novel class of drugs called PARP inhibitors, which interfere with proteins that repair DNA damage, can help women with inherited BRCA gene mutations that raise the risk of breast and ovarian cancer. In January, the Food and Drug Administration (FDA) approved Lynparza (olaparib) for people with HER2-negative metastatic breast cancer—including those with hard-to-treat triple-negative cancer—who previously used chemotherapy.
In the OlympiAD trial, Lynparza delayed disease progression and shrank tumors twice as much as chemotherapy. New data presented at the recent American Association for Cancer Research annual meeting showed that Lynparza may also improve overall survival— especially for people who didn’t receive prior chemotherapy, suggesting it may work best as first-line treatment. The EMBRACA trial, presented at the 2017 San Antonio Breast Cancer Symposium, showed that metastatic breast cancer patients treated with the experimental PARP inhibitor talazoparib were half as likely to
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experience disease progression or death as those treated with chemotherapy. Another type of targeted therapy, CDK4/CDK6 inhibitors, has also shown good results. These drugs block two cyclin dependent kinase proteins that regulate cell division. In February, the FDA approved Verzenio (abemaciclib) as a first-line option with hormone therapy for postmenopausal women with HER2negative advanced or metastatic breast cancer. The MONARCH 3 trial showed that Verzenio plus an aromatase inhibitor nearly doubled progressionfree survival, from 15 months to 28 months. Kisqali (ribociclib), another CDK4/CDK6 inhibitor, was already approved for first-line treatment of postmenopausal women with this type of breast cancer. The MONALEESA-7 trial showed that Kisqali plus hormone therapy also extends progression-free survival for younger premenopausal and perimenopausal women. Together, these findings suggest that new therapies like PARP inhibitors and CDK4/ CDK6 inhibitors could replace traditional chemotherapy—with its notoriously challenging side effects—for first-time treatment of advanced breast cancer.
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NEWS
NEW PROSTATE CANCER GUIDELINES
The American Society of Clinical Oncology (ASCO) recently released new prostate cancer guidelines recommending that the androgen blocker Zytiga (abiraterone acetate) or the chemotherapy drug docetaxel be added to androgen deprivation therapy (ADT) for men with advanced prostate cancer who haven’t yet received hormone therapy. Testosterone and other androgens (male hormones) stimulate prostate tumor growth. Androgen deprivation therapy—often started after surgery—reduces testosterone production. Zytiga, which was approved by the Food and Drug Administration (FDA) in February, stops production of other androgens throughout the body. The LATITUDE and STAMPEDE studies showed that starting Zytiga early along with ADT reduced the risk of death by about 40 percent. Men who have developed resistance to ADT but whose cancer has not yet spread also have a new option. A week later, the FDA approved Erleada (apalutamide), a medication that interferes with androgen receptor signaling, for men with high-risk prostate cancer that has stopped responding to standard hormone therapy. In the SPARTAN trial, Erleada delayed cancer progression or death by two years. Another study showed that a similar drug, Xtandi (enzalutamide), reduced the risk of metastasis or death by 71 percent. Some experts favor watchful waiting for men with no visible evidence of metastasis, but high-risk prostate cancer can quickly spread. “These findings suggest there may finally be a treatment that holds real promise for extending their health and their lives,” says Sumanta Kumar Pal, MD, of City of Hope Comprehensive Cancer Center in California.
Cancer Deaths Falling Cancer deaths in the United States fell by 26 percent over the past two decades, largely as a result of declines in breast, colon, lung and prostate cancers, according to the latest annual report from the American Cancer Society (ACS). The drop can largely be explained by less smoking, especially among men. Earlier detection and treatment advances also play a role. “This new report reiterates where cancer control efforts have worked, particularly the impact of tobacco control,” says ACS chief medical officer Otis Brawley, MD. “Strikingly, though, tobacco remains by far the leading cause of cancer deaths today, responsible for nearly 3 in 10 cancer deaths.” Survival is highest for prostate cancer (99 percent), skin melanoma (92 percent) and breast cancer (90 percent) and lowest for lung cancer (18 percent), liver cancer (18 percent) and pancreatic cancer (8 percent), which are often diagnosed at more advanced stages and are harder to treat. Despite the improvement, disparities persist: The cancer death rate for African Americans was 14 percent higher than the rate for white people. But the difference was much smaller among people older than 65, suggesting that universal access to Medicare helps overcome disparities in access to care seen at younger ages.
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NEWS
BY LIZ HIGHLEYMAN
GET MOVING! Increasing evidence confirms that exercise during cancer treatment has multiple benefits, including fewer side effects, less fatigue and better quality of life—and it may lower the risk of recurrence and cancer-related death. A recent meta-analysis of 34 clinical trials with more than 4,300 patients by the POLARIS consortium, presented at the 2018 Cancer Survivorship Symposium, showed that exercise significantly reduced fatigue, regardless of the type and stage of cancer. In May, the Clinical Oncology Society of Australia (COSA) issued a position statement recommending that exercise be considered an important part of cancer care. The experts advised getting at least 150 minutes of moderate or 75 minutes of vigorous aerobic exercise— such as walking, biking or swimming—and two or three sessions of resistance exercise each week. “Exercise is the best medicine someone with cancer can take in addition to their standard cancer treatments,” says Prue Cormie of Australian Catholic University, chair of COSA’s Exercise and Cancer Group. “If the effects of exercise could be encapsulated in a pill, it would be prescribed to every cancer patient worldwide and viewed as a major breakthrough in cancer treatment.” See page 34 for tips on keeping fit during treatment. 6 CancerHealth SUMMER 2018 cancerhealth.com
Acupuncture can help manage joint pain and stiffness in women taking hormone therapy for breast cancer, according to study results presented at the 2017 San Antonio Breast Cancer Symposium. Aromatase inhibitors, which interfere with the production of estrogen, can slow breast cancer growth and prevent recurrence, but they can also cause side effects, including joint pain, muscle aches, hot flashes and bone loss. Dawn Hershman, MD, of the Herbert Irving Comprehensive Cancer Center in New York reported results from a randomized trial showing that women who received true acupuncture using traditional Chinese medicine techniques had significantly more pain relief than those who received “sham” acupuncture. Nearly 60 percent of women in the first group had at least a two-point reduction in their worst pain scores. “We hope that these data will not only encourage health care practitioners to discuss acupuncture as a complementary therapy for patients receiving aromatase inhibitors but that they will also enhance payers’ willingness to reimburse these patients for acupuncture,” Hershman says.
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Acupuncture for Hormone Therapy Pain
News from the American Association for Cancer Research annual meeting
LUNG CANCER BREAKTHROUGHS Immunotherapy for advanced lung cancer was the big news at the American Association for Cancer Research annual meeting in April, with major studies yielding data that researchers called “practice-changing.” Some tumors can turn off T cells by hijacking immune checkpoints, proteins that regulate immune function. Checkpoint inhibitors can release the brakes and restore T-cell activity. But they don’t work for everyone and experts don’t yet know why. A combination of two checkpoint inhibitors, the PD-1 blocker Opdivo (nivolumab) and the CTLA-4 inhibitor Yervoy (ipilimumab), delayed cancer progression in previously untreated people with metastatic or recurrent non-small-cell lung cancer (NSCLC) and a high tumor mutation burden, meaning their cancer had accumulated many genetic changes. In the CheckMate-227 trial, 43 percent of participants using the combo were still alive without disease progression after one year, compared with 13 percent of those who used standard chemotherapy. Other studies showed the benefits of using checkpoint inhibitors together with chemotherapy. In KEYNOTE-189, people with newly diagnosed metastatic lung cancer who used the PD-1 inhibitor Keytruda (pembrolizumab) with Alimta (pemetrexed) and platinum chemotherapy reduced their risk of death by 51 percent and delayed disease
progression by about four months. Estimated one-year overall survival rates were 69 percent for Keytruda recipients versus 49 percent for those who used chemotherapy alone. IMpower150 showed that first-line treatment with the PD-L1 blocker Tecentriq (atezolizumab) plus Avastin (bevacizumab) and platinum chemotherapy lowered the risk of disease progression or death by 38 percent compared with chemotherapy alone in people with advanced NSCLC. In all these studies, participants with certain biomarkers saw greater benefits, highlighting the need to learn how to match patients with the treatment that is most likely to work for them.
TARGETING MUTATIONSS A new targeted therapy directed against the RET tyrosine kinase receptor led to tumor shrinkage in a third of people with advanced thyroid and lung cancer carrying certain mutations. Known as BLU-667, the drug showed broad antitumor activity against cancers with a variety of RET alterations.
Although BLU-667 works against only a small proportion of cancers, it supports an emerging paradigm of targeting cancers with specific genetic characteristics regardless of where they occur in the body— pointing to the need for more genetic testing to match individuals to appropriate therapies.
“I encourage all cancer patients to undergo genomic testing, as tumors with rare genomic aberrations may have effective drugs that are in clinical trials that could be beneficial to them,” says lead investigator Vivek Subbiah, MD, of MD Anderson Cancer Center.
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BASICS
BY LIZ HIGHLEYMAN
Is a Clinical Trial Right for You? THE PROCESS OF DEVELOPING new medications is complex, lengthy and expensive. Only a tiny fraction of compounds make it from the laboratory to clinical trials, and less than 10 percent of drugs that enter Phase I studies are ever approved, according to the Food and Drug Administration (FDA). Preclinical studies: Drug candidates first undergo in vitro (Latin for “in glass”) testing in a laboratory. For example, researchers may test whether a compound kills cancer cells in a petri dish. If these tests are promising, the drug will often be tested in mice or other animals. But activity in a test tube or a mouse does not mean that a drug will work in people. Phase I: If a compound still looks promising, researchers submit an application to the FDA for designation as an Investigational New Drug. The first human trials usually include 10 to 100 participants, starting with healthy volunteers. These trials look for side effects and collect information about how a drug is processed in the body, known as its pharmacokinetics. Researchers also try to determine which dose will provide the best balance of activity and safety. Phase II: Mid-level trials typically include a few dozen to a few hundred participants. They are designed to test
whether a drug still appears safe in a larger group of people with cancer and to gather preliminary data on efficacy, or how well the therapy works under ideal conditions. Phase III: The largest and longest trials, usually enrolling several hundreds or thousands of people, aim to determine how well a drug works in the population that will ultimately use it. This often involves comparing the new drug against existing therapies. Data from major Phase III studies—known as pivotal trials—may be submitted to the FDA to support a New Drug Application for approval. Phase IV: After a drug has been approved and made commercially available, postmarketing studies are done to see how well it works under real-world conditions and to determine its long-term safety
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and effectiveness. This is important because uncommon side effects may show up only after a drug is used by many people over a long period. An experimental drug can take years to move from the laboratory to pharmacy shelves, but there are ways to speed up access to promising therapies for life-threatening diseases. People who are unable to enroll in a trial and have no satisfactory alternatives can request expanded access, or compassionate use. The FDA grants most expanded access requests, but pharmaceutical companies don’t have to provide their investigational drugs outside trials and insurers don’t have to pay for them. TRIAL DESIGN A good trial design is critical to ensuring that a study can provide reliable information about how
ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)
Joining a trial can be a good way to get promising experimental therapies, but you should carefully weigh the potential risks and benefits.
well a drug works. In particular, trials should include enough participants and last long enough to produce statistically significant results, meaning that the findings are unlikely to be attributable to chance alone. A study’s enrollment criteria describe who may participate. Cancer trial inclusion criteria specify the type of cancer, stage of disease and prior treatments. Today, study criteria often include genetic characteristics that predict whether a drug will work. As inclusion criteria become more specific, it gets harder to enroll enough people. Researchers may be tempted to select participants who are most likely to do well on a new therapy. But it is important to include a range of participants who reflect the population that will actually use the drug, such as people with advanced disease, those with other health problems and people of all ages and from all racial and ethnic groups. The gold standard for testing new drugs is the randomized controlled trial. In these studies, participants are randomly assigned to receive either the experimental therapy or a comparison intervention, which could be a competing new drug, the currently available standard treatment or a placebo (an inactive mock treatment, such as a sugar pill or saline injection). Randomization—meaning any trial participant has an equal chance of ending up in any treatment arm—helps ensure that all the groups are otherwise
similar. But this also means that not everyone who joins a trial will receive the experimental drug under study. Another way to reduce bias is double-blind studies, where neither the investigators nor the participants know who is assigned to which treatment arm. In open-label studies, everyone knows who is getting which treatment. Study endpoints are milestones that must be met for the experimental therapy to be considered a success. The ultimate endpoint for cancer treatment is overall survival. But in some trials—especially those for early-stage or curable cancers—most participants will not die during the course of the study. Progression-free survival (meaning participants are still alive without worsening of disease) and overall response (meaning complete or partial tumor shrinkage) are endpoints that can be measured sooner. Cancer trials increasingly also include patient-reported outcomes, such as quality of life and ability to perform daily activities.
JOINING A TRIAL When considering a trial, learn all you can about the study and the treatment being tested. Although they are governed by regulations to ensure that they are as ethical and safe as possible, trials of new therapies—especially novel types of drugs—can’t offer guarantees. Researchers don’t yet know how effective the treatment will be and can’t rule out unforeseen side effects. Before agreeing to join, you should be given information about all aspects of the trial, including its potential risks, and must sign an informed consent document. But informed consent is not a contract—participants have the right to withdraw from a trial at any time for any reason. Joining a clinical trial may be an obvious choice for people with advanced cancer who have exhausted all available treatment options. Those with less advanced disease may be motivated by altruism and a desire to help advance medical science for future patients. ■
TRIAL PROS AND CONS Pros: • Early access to promising new therapies • Free drugs and health monitoring • Expert doctors and leading medical centers • Satisfaction of helping others • Advancement of medical knowledge
Cons: • Inconvenient and time- consuming study visits • Need to stop or forgo other treatment • Might not receive experimental therapy • Experimental therapy might not work • Risk of side effects
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BASICS
BY LIZ HIGHLEYMAN
What Is Multiple Myeloma?
Outcomes are improving for this hard-to-treat blood cancer. on how advanced the cancer is and what symptoms are present. Traditional chemotherapy works by killing fast-growing cells throughout the body, including cancer cells. Steroids such as dexamethasone and prednisone kill myeloma cells and reduce damaging inflammation. The immunomodulators Revlimid (lenalidomide) and Pomalyst (pomalidomide) inhibit myeloma cell multiplication. Velcade (bortezomib) and Ninlaro (ixazomib) are proteasome inhibitors that kill cancer cells by blocking the breakdown of unneeded proteins. Empliciti (elotuzumab) is a targeted therapy that activates natural killer cells and helps them recognize myeloma. Darzalex (daratumumab) is an antibody that targets CD38, a protein on myeloma cells. New immunotherapies have potential as future treatment options. Researchers are studying the checkpoint inhibitors Keytruda (pembrolizumab) and Opdivo (nivolumab), which take the brakes off T cells, in combination with steroids and
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Multiple myeloma cells
immunomodulators. At the 2017 American Society of Hematology meeting, researchers reported that bb2121—an experimental CAR-T therapy that involves genetically reprogramming T cells to attack cancer—led to multiple myeloma remission, in some cases lasting more than a year. Combination therapy, for example using a steroid, an immunomodulator and a targeted therapy, usually works better than a single drug alone. While multiple myeloma often improves with treatment, sometimes for years, relapse is still common. But as treatment becomes more effective, the duration of remission is increasing and survival rates are going up. Newly available treatments, as well as those in the pipeline, promise to further improve survival in the coming years. ■
JOHN DIGIANNI, DANA-FARBER CANCER INSTITUTE
MULTIPLE MYELOMA IS A blood cancer that affects the bone marrow, where new blood cells are produced. About 30,800 people in the United States will be diagnosed with multiple myeloma, and about 12,800 people will die from it this year, according to the American Cancer Society. Multiple myeloma involves the overproduction of plasma cells, mature B cells that make antibodies to fight infection. In people with myeloma, abnormal plasma cells multiply too rapidly and make ineffective antibody fragments. The abnormal plasma cells can clump together to form tumors. Excess myeloma cells may interfere with cells that repair bone, leading to bone loss and fractures. They can crowd out the normal bloodforming cells in the bone marrow, leading to low red and white blood cell counts. Abnormal antibody fragments can build up and damage the kidneys and other organs. These fragments can’t fight invaders the way normal antibodies do, which leaves people prone to infections. Treatment for multiple myeloma has improved and survival has increased in recent years. Options include chemotherapy, steroids, targeted therapies, immunotherapy, radiation therapy and stem cell transplants. Treatment depends
All Hannah’s parents should worry about is Hannah When Hannah’s bloodwork revealed cancer, her family was devastated. But because of our donors, her mom and dad can focus on being parents while she looks forward to her visits with the music therapist at St. Jude Children’s Research Hospital ®. Families like Hannah’s will never receive a bill from St. Jude for treatment, travel, housing or food— because we believe all they should worry about is helping their child live.
Experience Hannah’s story at stjude.org/hannah
“We’re blessed to be here because St. Jude makes it so we really can just focus on her.”
©2017 ALSAC/St. Jude Children’s Research Hospital (33431)
–Chandra, Hannah’s mom
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VOICES
BY KARUNA JAGGAR
Right to Try Is False Hope
Karuna Jaggar is executive director of Breast Cancer Action, a national education and activist organization that works to achieve health justice for women at risk of and living with breast cancer and advocates for systemic change to stop breast cancer before it starts. usually within a few days— or just 24 hours in emergency situations. It’s almost always the drug companies, not the FDA, that don’t grant access to experimental treatments. Drug companies may deny requests for access outside a clinical trial because there isn’t enough of a limited-supply investigational drug or because they decide the benefits don’t outweigh the risks. Nothing about Right to Try legislation changes that. It may make companies more reluctant to provide experimental drugs without FDA oversight. And it could undermine the clinical trial model at a time when many trials are already struggling to enroll patients. The heartbreaking truth is that even when patients get access to investigational treatments, they’re still not necessarily lifesaving. Experimental drugs are just that: experimental. We don’t yet know if they work or if they’re safe. These deregulatory efforts don’t include protections against unscrupulous doctors or drug companies charging as much as they want for unproven therapies.
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Karuna Jaggar
I just completed treatment for an exceedingly rare cancer. I understand as well as anyone the urgent need for more effective, less toxic treatments. I believe we should all demand more from the billions spent on medical research, as well as a health system that prioritizes patient well-being. But Right to Try legislation attacks the one agency tasked with ensuring the safety and efficacy of medications, and its promises are based on nothing more than false hope. Taking the FDA out of the picture is not the way to promote and protect public health—and it won’t save lives. ■
COURTESY OF BREAST CANCER ACTION
THERE IS NO RIGHT way to deal with the devastating news that you’ve run out of treatment options as a dying or desperately ill patient. On the surface, the debate over Right to Try legislation appears to be about whether seriously ill people, for whom no effective treatment remains, are allowed to access experimental drugs that have not been approved by the Food and Drug Administration (FDA). Framing the issue as “right to try” tugs at the heartstrings and suggests that medicine’s failures are not scientific but regulatory. But behind the appealing, how-could-anyonenot-support-it name, Right to Try is a libertarian effort by the Goldwater Institute and some Republicans to deregulate the drug market and weaken the FDA. It promises a quick fix for a problem that doesn’t exist. The implication is that the cure is out there but it’s being kept from patients by government bureaucrats. In reality, medical advancement is painfully slow. But the FDA approves new treatments faster than any other developed country. For seriously ill patients, it already has a compassionate use program that offers a pathway to obtain experimental drugs. The FDA approves 99 percent of compassionate use requests,
BY KELLY SHANAHAN, MD
VOICES
Dying for Access
ROBIN JERSTED/MEDSCAPE.COM
Kelly Shanahan, MD, is a wife, mother, daughter, doctor, woman living with metastatic breast cancer and medical director of METUP, a metastatic breast cancer advocacy group. WE’RE DYING to participate in clinical trials. This was the message METUP delivered at the San Antonio Breast Cancer Symposium. At a time when only 3 to 5 percent of eligible cancer patients enroll in clinical trials— and some trials are unable to get off the ground because of low accrual—reform of the clinical trial process is imperative. For far too long, oncology trials have sought what we call “Olympians”: the healthiest of the dying. These include patients who haven’t undergone multiple prior lines of therapy; those without brain metastases (cancer spread to the brain); those who don’t have comorbidities, like diabetes, high blood pressure or HIV; and those who aren’t as old as the average patient who will use the drug under study. In addition to restrictive eligibility requirements, there are logistical and financial barriers to participation in clinical trials. Although the majority of cancer patients in the United States are treated in community hospitals, most trials are conducted at big city academic centers. I recently talked to a woman in a trial who drove six hours round-trip for a five-minute blood draw at a large center! Major players in the cancer research game are beginning to recognize that change is necessary. The American Society of
Kelly Shanahan, MD, and METUP members demonstrate at San Antonio Breast Cancer Symposium.
Clinical Oncology, Friends of Cancer Research and the Food and Drug Administration recently examined eligibility requirements for clinical trials and made recommendations to facilitate enrollment of people who are more representative of the population that needs a new drug. These recommendations include allowing enrollment of patients with stable treated brain metastases—and even those with active brain mets— if they could benefit and if brain metastases are common in the population; people with kidney or liver disease if the drug is not toxic to those organs; and patients with prior or concurrent cancers if this is unlikely to compromise the safety or efficacy of the drug. In addition, trials should include patients in the age
groups most affected by the cancer and work harder to enroll people of all races, ethnicities and socioeconomic statuses. And breast cancer trials should include men as well as women. Trials should begin to move away from the brick-and-mortar mother-institution model and accept outside imaging and lab tests. When specialty labs are required, samples can be drawn locally and shipped to the research center. If FedEx can get the best seller I ordered from Amazon to me in a day, then surely a local lab can get blood to a research center promptly. By broadening eligibility criteria, we will be able to get promising drugs to market faster. We, the metastatic and advanced cancer patients, want to help researchers help us live longer. ■
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DIARY
AS TOLD TO MEAVE GALLAGHER
A Testicular Cancer Diary Justin Birckbichler, 26, is an elementary school teacher in Fredericksburg, Virginia. He is the creator of the blog A Ballsy Sense of Tumor, which appears on CancerHealth.com.
In the shower I did a testicular self-exam, something I’d been doing since I was 12. I felt a suspicious lump in my left testicle. In mid-September, I had felt a pea-sized hard lump, but I ignored it. Now, it was bigger. It was time to see the doctor. Three weeks later, the doctor looked me in the eye and said, “You have cancer. We need to remove the mass immediately.” I went home and talked to my then fiancée, now wife, Mallory. I knew surgery was necessary, but it was still a lot to process. I cried. The radical inguinal orchiectomy removed my entire left testicle. Two days later, I got a CT scan and an X-ray. One of the nurses said I seemed to be taking my diagnosis well. It was my mindset: I’m going to get better, and being down about it won’t help. While I was stuck in bed recovering, I started writing down my story. I kind of assumed that the surgery wouldn’t be the end of my cancer journey, which—plot twist—it wasn’t.
November 2016
A scan showed that the cancer had spread to my lymph nodes. My diagnosis was Stage IIb nonseminoma, a more aggressive type of cancer. My doctor recommended chemotherapy. Grandpa’s mantra echoed in my head: “Just tell me what to do and I’ll do it.” I decided to turn my diary into my blog, A Ballsy Sense of Tumor (ABSOT). It wasn’t going to be a “cancer sucks” blog—I would approach this in the happiest way I could. My first day of chemo was November 28. I always wore funky pajama bottoms to chemo, and it was fun seeing the other patients’ smiles when I’d walk 14 CancerHealth SUMMER 2018 cancerhealth.com
in with bright Star Wars or Avengers pants. Having caregivers made it pretty easy, emotionally. My mom would come down from Pennsylvania for a couple of weeks at a time, and Mallory would take care of me during the weeks when my mom wasn’t there. Even though we were new to the area and school, some of our neighbors helped out with chores, and coworkers brought food and care packages. It was awe-inspiring to see the kindness of (basically) strangers.
January 2017
I had my final round of chemo on January 30. When I rang the bell at the finish, wearing my brand-new Avengers pants, everyone applauded.
March 2017
My most recent CT scans were clear. Hearing the words You are in remission was surreal. I would have another CT scan in June, and if those results were good, my chemo port could be removed. My doctor wanted to make sure it was out before our honeymoon. That meant a lot to me. I was happy about remission, but this was mixed with anxiety about the possibility of recurrence. My doctor said cancer patients are often emotionally fine during treatment but struggle in the aftermath. Even though my body had begun to heal, my emotional recovery was only beginning.
(SNAPSHOTS) COURTESY OF JUSTIN BIRCKBICHLER; (PAPER PIECES) ISTOCK
October 2016
Seminoma and nonseminoma: The two main kinds of testicular cancer, classified according to the type of cells affected. Nonseminomas are more common and usually grow faster. From left: Justin Birckbichler undergoing chemotherapy, speaking about testicular cancer and riding an ATV during his honeymoon in Hawaii
April 2017
During one of my now-daily self-checks, I felt what seemed to be a lump on my right testicle. Cue full-blown panic mode. The next morning, I made appointments for an ultrasound and an exam. The results? Nothing. I couldn’t even feel the lump I’d been so sure was there the night before. My urologist suggested I might be self-checking too often. “Mondays suck anyway,” he said, “so make that your check day.”
July 2017
Though it was tough, the first half of 2017 brought a lot of good too: remission, another new job, a second clean scan, our wedding. Mallory and I went to Hawaii for our honeymoon. For two weeks, I didn’t worry about recurrence. We hiked up a crater, drove ATVs in Jurassic World and swam with dolphins— and I embraced every moment of it.
November 2017
Prior to cancer, I was involved in about 10 different side projects. I was like a dog chasing a ball—little did I know I was about to lose one. But I was neglecting my relationships and other things that really matter. Halfway through chemo, I walked away from nearly all those projects. I wanted more time with Mallory and our pets and to work on spreading awareness with ABSOT.
January 2018
In December, I had another scan. One lymph
node was 1.3 centimeters. My doctor said he’d still consider me to be in remission and we’d keep an eye on it. My next scan is in June. I’ll be on a six-month rotation for the next few years.
April 2018
Orchiectomy: Removal of a testicle Port: A small disk implanted under the skin for giving chemotherapy without injection into a vein Stupid Cancer: A group offering advocacy and support for young adults with cancer (StupidCancer.org)
April is Testicular Cancer Awareness Month. Since making my story public, I’ve jumped at every opportunity to talk about health and testicular cancer—it isn’t discussed nearly as much as other cancers. I do TV interviews, I’m producing a video for high school students on how to do self-exams and I lead a discussion on the Stupid Cancer app. I still have a real fear of recurrence. No matter how many clear scans I’ve been lucky to have had so far, it’s always in the back of my mind. Though running a cancer blog may seem counterproductive to not allowing my cancer fears to consume me, it’s important to get my feelings out on my terms, in a way that’s helpful for others. I want to offer a real-life perspective to other people with cancer, since that was something I had a hard time finding. I’ve been trying to show people that they’re not alone—there’s a community of people who can benefit from sharing our stories. ■ cancerhealth.com
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Laura Greco faced lung cancer and became an advocate.
OF THE How an unexpected lung cancer diagnosis reshaped Laura Greco’s world BY ROBIN WARSHAW
LAURA GRECO WAS SURE she had dodged a bullet on that bitter cold day in February 2015. As she drove through falling snow with her 6-year-old son, she saw an SUV traveling head-on on their side of the road. Greco honked, but the SUV kept coming. A wall of snow blocked her from steering to the right, so she guided her vehicle into the empty oncoming lane. “Suddenly, everything on the right side of the car exploded as the SUV sideswiped me,” Greco recalls. Minutes later, she and her child were in a hospital emergency room near their Wilton, New York, home being checked for injuries and feeling shook up. “All I’m thinking is, We just walked away from this and we could have died,” says Greco. Her son had a concussion but was otherwise OK. After Greco had a CT scan, a physician assistant came in and said, “We don’t see anything related to the car accident, but you might want to get that mass in your lung checked out.” Greco was still so unnerved from the collision that his words barely registered. He asked whether she had ever smoked or whether she had a cough or shortness of breath. Greco, then age 40, answered no to each question. The physician assistant said it was probably nothing, but suggested she follow up with her family physician. “I left thinking it was no big deal,” she says. “I was more shaken up about the accident.”
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TAKING ACTION Many people are astonished to learn that they have lung cancer. The disease has lurked in the shadows of public awareness for decades because its link to smoking and its high death rate stigmatize patients, limit research and curb support. Lung cancer is expected to cause about 154,000 deaths this year in the United States, according to the American Cancer Society—more than breast, prostate and colon cancers combined. It is by far the No. 1 cancer killer of both men and women. People who have never smoked, like Greco, account for as many as 20 percent of those with the disease. When just lung cancer among never smokers is measured, it’s still the seventh leading cause of cancer death. Greco was unfamiliar with those statistics when she was diagnosed. Because her family lives in a small town, she decided to go to the Dana-Farber Cancer Institute in Boston for treatment. The doctors there said they would give her aggressive therapy, with the goal of curing her disease. “I liked the sound of that, even though the chance of a cure was low,” she says. Greco learned her cancer had a change in the ALK, or anaplastic lymphoma kinase gene. ALK mutations occur in about 5 percent of lung cancers. Drugs that target the mutation are usually given only to patients with Stage IV or metastatic disease that has spread beyond the lungs, so Greco initially received chemotherapy with cisplatin and etoposide. 18 CancerHealth SUMMER 2018 cancerhealth.com
Having treatment about 200 miles from home was tough physically, emotionally and financially. Taking a leave from her full-time job as a lawyer, Greco stayed at a short-term rental apartment in Boston on weekdays and traveled home on weekends to spend time with her two young sons and her husband. “It left me very tired and nauseous. It was not fun. But I survived it,” she says. PERSEVERANCE AND PURPOSE Greco had surgery to remove part of her left lung and several lymph nodes. Her doctors next advised her to undergo further chemotherapy because some nodes had not responded well to the earlier treatment. She went for a second opinion to an ALK-positive lung cancer specialist, who agreed with that advice. Greco finished the added chemotherapy in October 2015. To increase her energy, she exercised several times a week. She became active in lung cancer advocacy, helping to form the online support organization ALK Positive, which now includes more than 800 ALK-positive lung cancer patients, survivors and caregivers. A year later, Greco’s neck started to hurt. The lung cancer had metastasized. Finding out she had Stage IV disease was “devastating for me and my family,” she says. “Now it’s not curable.” But her lung cancer was treatable. She switched her care to the specialist and went on Alecensa (alectinib), a drug that targets ALK. After three weeks, scans showed her cancer was reduced by 50 percent. At six weeks, it was down by 75 percent and had stabilized. In February 2017, when blood tests showed problems with two liver enzymes, Greco went off the drug for five weeks. The cancer grew, but after starting treatment again, it was reduced and stabilized once more. “Since then, knock wood, I’ve been OK,” she says. A scan performed in January 2018 showed “no sign of progressive disease.” Greco has visited Congress to push lawmakers for more lung cancer research, spoken to survivors and their families and been involved with fundraising for ALK Positive. This year, in partnership with the LUNGevity Foundation, the group is awarding its first ALK-positive research grant. “I’m really dedicated to speaking up about lung cancer because nobody talks about it,” Greco says. “Whether I live or die is dependent on a future medical advance.” ■
PREVIOUS PAGES: SARAH SMITH; (SMOKE) ISTOCK
NEWS AND DISBELIEF Three days later, Greco visited her primary care doctor, who reassured her that she was at low risk for lung problems but wanted to see the scan. Later that day, after viewing the image, the doctor called to tell Greco she needed a biopsy right away. “There was clear concern in her voice,” Greco says. She immediately went online to find information about lung cancer. “I thought, This can’t be me!” she recalls. “Like most of us in this country, I had been brainwashed with the idea that only smokers get lung cancer. And that if you don’t smoke, you don’t need to worry about lung cancer.” The biopsy showed she had Stage IIIa non-small-cell lung cancer (NSCLC). The five-year survival rate was about 16 percent. “It was the worst day of my life,” Greco recalls.
The Stigma of Lung Cancer “Did you smoke?” That’s the first question people with lung cancer often hear when they tell someone about their diagnosis. It’s a question that carries an unmistakable subtext of accusation and blame. Such attitudes compound patients’ distress, bringing feelings of guilt, shame, anger and social isolation. The stigma affects access to treatment, research funding, public empathy and support for all people with lung cancer, whether they’re current smokers, former smokers or never smoked. Don Stranathan, 66, of Santa Rosa, California, diagnosed with Stage IV non-small-cell lung cancer in 2009, gets asked The Question frequently. He quit smoking cigarettes and what he calls “heavy drinking” 30 years before his lung cancer diagnosis. He had the occasional cigar until 1998, when he was diagnosed with a heart condition. “I just say, ‘I engaged in risky behavior,’” he says. “I think that’s more important than coming right out and saying, ‘I was never a smoker’ or ‘I smoked’ because when we do that we’re putting more attention on the stigma.” Public health campaigns have rightly delivered the message that smoking increases lung cancer risk. Yet most people don’t know that there are other causes, such as radon exposure (the second leading cause of lung cancer), diesel
fumes and other toxins, as well as secondhand smoke. Because lung cancer is so firmly associated with smoking in people’s minds, it’s perceived as a “self-inflicted disease,” like HIV often is, says Pierre P. Massion, MD, a lung cancer researcher and physician at the Vanderbilt-Ingram Cancer Center in Nashville. He considers smokers with lung cancer to be in the grip of “a very difficult addiction.” As a result, like people with HIV, people with lung cancer are often seen as essentially causing their own disease, and they may be hesitant to disclose their diagnosis to others. And like HIV advocates, many lung cancer advocates have made fighting stigma part of their mission. Stranathan says stigma can come even from others in the lung cancer community when they tell their stories. “They say, ‘I was diagnosed with lung cancer and I was never a smoker.’ I understand. There is such a stigma that they want to say, ‘Hey, I didn’t do anything to cause this,’” he says. “But what a person who was a smoker hears is, ‘I don’t deserve this—maybe he does, but not me—because I was never a smoker.’” Health care providers also may reflect the stigma in their attitudes and care. Research on primary care doctors showed that they were less likely to refer advanced lung cancer patients for treatment than people with
advanced breast cancer. Some surgeons refuse to operate on smokers with lung cancer, requiring them to quit first because smokers have a higher risk of postoperative complications, says Massion. Smoking cessation attempts can delay surgery by a month or two, and some people are unable to quit. The bias also affects research that could help develop new treatments. Although there are more deaths from lung cancer each year in the United States than deaths from any other cancer, research funding per death is far lower. According to 2017 statistics on federally funded research compiled by the LUNGevity Foundation, lung cancer research received only $2,399 per death, compared with $14,533 for prostate cancer and $24,061 for breast cancer. Stranathan uses The Question as an opportunity to inform people that more than 60 percent of those diagnosed with lung cancer are either former smokers or never smoked. “There’s definitely something more than just smoking that’s causing lung cancer,” he says. And if his questioners say they never smoked, he tells them, “That’s not a get-out-of-jail-free card. Because if you have lungs, you can get lung cancer.”
SPARE YOUR HAIR DURING CHEMO Scalp cooling technology can prevent hair loss caused by cancer treatment. BY LIZ HIGHLEYMAN
L
OSING YOUR HAIR CAN BE ONE OF THE MOST devastating side effects of cancer treatment. Experts estimate that as many as 10 percent of people refuse recommended chemotherapy because they’re worried about losing their hair. But a technology now becoming widely available in the United States can help prevent hair loss. Stephanie Wells, a college professor who lives in Oakland, California, didn’t expect to need intensive treatment when she was diagnosed with Stage I breast cancer in August 2016. And she didn’t expect to lose her hair. Wells, now 52, has a family history of breast cancer and got mammograms twice a year, so she caught hers early. But because of the characteristics of her tumor, her doctors wanted to play it safe. After surgery, she received Taxol (paclitaxel) once weekly for three months, underwent radiation every day for six weeks and took Herceptin (trastuzumab) for a year. “It was surprising how long my treatment lasted, considering how early my cancer was diagnosed,”
Wells says. “I decided I’d do whatever I had to do to prevent recurrence, but it was more than I bargained for—I guess cancer always is.” At least half of the quarter million women diagnosed with breast cancer each year will receive chemotherapy that usually causes hair loss, or alopecia, according to Hope Rugo, MD, director of the Breast Oncology Clinical Trials Program at the University of California at San Francisco (UCSF) Helen Diller Family Comprehensive Cancer Center. Although it takes only a couple of weeks to start losing hair during chemotherapy, it can take months or even years to grow it back— and sometimes hair loss can be permanent.
Stephanie Wells used the DigniCap Scalp Cooling System during chemotherapy.
HOW IT WORKS Traditional chemotherapy kills rapidly dividing cells. In addition to cancer cells, the medications can also harm fast-growing normal cells, such as those in the gastrointestinal tract and hair follicles, leading to familiar side effects like nausea and hair loss. Scalp cooling constricts blood vessels and reduces the amount of chemotherapy drugs that reach the hair follicles. It also slows down the metabolism of those cells so they’re less sensitive to chemo, according to Rugo. Although scalp cooling has been used for decades in 26 CancerHealth SUMMER 2018 cancerhealth.com
DigniCap silicone inner caps in different sizes
Europe, it’s a relatively new option in the United States. “The idea has been around for a while. One of my patients was told to use a bag of ice in a shower cap maybe 50 years ago,” says Laura Esserman, MD, director of UCSF’s Carol Franc Buck Breast Care Center. “If hair loss is something our patients really care about, it’s something we should really care about,” she continues. “It’s an aspect of cancer care that just robs people of a feeling of wellness, dignity and privacy. An essential part of our job is to be an advocate for the people we care for.” Several companies offer manual cooling caps that must be kept in a special freezer or on dry ice and changed every 20 to 30 minutes as they thaw out. Penguin Cold Caps makes its own cap, while Arctic Cold Caps, Chemo Cold Caps and Wishcaps use Elasto-Gel caps. This method reduces hair loss in many cases, but it can be hard to get a tight enough fit and keep the caps cold enough. Manual cooling caps are not regulated by the Food and Drug Administration (FDA) and cancer centers don’t provide them. But more than 100 centers have installed freezers—many of them donated by The Rapunzel Project, a nonprofit started by two Minnesota breast cancer survivors—to store caps brought in by patients. DigniCap and another scalp cooling system from Paxman, based in Huddersfield, England, use refrigeration to automate the process. These systems circulate a coolant through tubes in a tight-fitting silicone inner cap, which is covered by an insulating neoprene outer cap. Computer controls gradually lower the temperature and maintain it near freezing. Both systems are available at more than 100 cancer centers in the United States; The Rapunzel Project maintains a list of centers equipped with cold cap freezers and DigniCap or Paxman machines. Richard Paxman’s grandfather invented a beer cooling
PREVIOUS PAGES: (WELLS) ANGELA DECENZO THIS PAGE: (CAPS) COURTESY OF DIGNITANA
Wells’s oncologist at UCSF told her about the benefits of scalp cooling technology and encouraged her to try it. “Before, I thought maybe going bald would be empowering—I have a sense of self that baldness wouldn’t take away,” Wells says. “But I wanted to go out in public and not have people see me as a patient. At a time when I had lost control over a lot of things in my life, it was reassuring to look in the mirror and recognize myself.” During each weekly Taxol infusion, Wells used the newly available DigniCap Scalp Cooling System from Dignitana, based in Lund, Sweden. She received a grant from HairToStay to help pay for it (see sidebar, page 29). “The first couple of times it was uncomfortable—the cap is really tight,” Wells recalls. “It can be painful when your head starts to freeze for about five minutes, but then it’s completely numb. You have to get your head down to a cold temperature beforehand, then you have a couple hours of chemo, then they leave you frozen for another hour—it’s basically an all-day affair.” Though Wells lost about 20 percent of her hair, her appearance remained pretty much the same. “I knew, my hairdresser knew, but you couldn’t tell by looking at me,” she says. “It was not detectable to anyone who didn’t know.”
system for breweries in the 1950s. His father, Glenn Paxman, now the company’s chairman, drew on the family’s expertise in refrigeration after his wife, Sue, was diagnosed with breast cancer. She used one of the early manual caps, but it didn’t work for her, prompting Glenn and his brother Neil to develop an automated cooling system in the late 1990s. “When I was 10, my mum was diagnosed with breast cancer,” says Richard Paxman, now company CEO. “For all the family, seeing her starting to lose her hair was just Women using the Paxman Scalp the hardest thing and indeed Cooling System the first visible sign she was ill. That was the first time she actually cried. Our personal understanding of how hair loss impacts someone going through chemotherapy is our driving passion.” The DigniCap received FDA clearance in December 2015 for women with breast cancer, after it was shown to be safe and effective in clinical trials. In July 2017, it was cleared for women and men with any type of solid tumor. The Paxman system received FDA clearance for breast cancer in April 2017, and the company has requested clearance for all solid tumors. Rugo, Esserman and their group at UCSF spearheaded the DigniCap trials. Richard Paxman was part of a team that conducted a similar study of the Paxman system, led by Julie Nangia, MD, of Baylor College of Medicine in Houston. Both studies were published in the February 14, 2017, Journal of the American Medical Association. “There were a lot of myths and tales, like you had to start the cooling four hours before chemotherapy and continue four hours after, but there was little science,” Esserman says. “We really needed trials by credible institutions to figure out if this works.” The DigniCap trial enrolled 122 women with Stage I or II breast cancer at five centers. They all used chemotherapy
drugs known as taxanes (85 percent used docetaxel; 12 percent used paclitaxel). Participants in the DigniCap group started wearing the cap half an hour before chemotherapy infusions and continued for one and a half to two hours afterward. A matched control group didn’t use scalp cooling. Two thirds of the women who used DigniCap lost less than half their hair, including five who had no hair loss. More than 80 percent of those treated with paclitaxel for 12 weeks—the regimen Wells used—kept most of their hair. In comparison, everyone in the control group lost most of their hair. The Paxman trial enrolled 182 women with early breast cancer at seven U.S. centers. Nearly two thirds received docetaxel or paclitaxel, while the rest used the more toxic doxorubicin. They were randomized to use scalp cooling starting 30 minutes before and continuing 90 minutes after chemotherapy or not to use scalp cooling. Half the women who used the Paxman system lost less than 50 percent of their hair and did not need a wig or head covering, while everyone in the control group lost most of their hair. But results differed according to the type of chemotherapy: 65 percent of those using the taxane drugs kept most of their hair, compared with just 22 percent of those taking doxorubicin. The most common side effects were headaches, scalp pain and chills, which were usually mild or moderate and often lessened after the first session or two. A few people in each study dropped out because they felt too cold. Some providers have expressed concern that scalp cooling could allow cancer to spread to the scalp. But scalp metastasis is rare and usually occurs only in people with metastasis elsewhere in the body, according to Rugo. Long-term studies in Europe have shown that scalp cooling does not increase the risk of scalp metastasis and has no effect on survival.
COURTESY OF PAXMAN
“IT WAS REASSURING TO LOOK IN THE MIRROR AND RECOGNIZE MYSELF.”
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Left: Laura Esserman, MD. Right: Glenn Paxman and Richard Paxman.
them to treat me as they always had, and the loss of my hair would have been a constant visual reminder of my illness,” says Allen Wasserman, 59, an attorney in Weston, Connecticut, who used the DigniCap while undergoing treatment for stomach cancer. “When the cooling process starts, you get that headache you get when you eat an ice pop too fast. That feeling subsides after a minute or two and you adjust to the cold,” Wasserman continues. The results, he says, were “nothing short of a miracle. You lose a lot of control over things when dealing with cancer, but scalp cooling allows you to retain control over your appearance.” Researchers are working to develop targeted therapies that don’t cause hair loss, but today a majority of patients continue to receive cell-killing chemotherapy. “The best thing is to develop new treatments that both cure cancer and avoid side effects,” Esserman says. “But in the meantime, we can reduce suffering by preventing hair loss.” Hair loss is not life-threatening, and some people feel that losing your hair is a small price to pay for saving your life. But it can have a big psychological impact, and it can tell the world you’re living with cancer. “It might seem frivolous—I thought so myself at first—but keeping my hair turned out to be important at a core level,” Wells says. “If I didn’t feel terrible, I could forget for a minute that I had cancer. I could choose who knew. It allowed me to remember there’s more to my life than cancer.” ■
(ESSERMAN) COURTESY OF UCSF/ELENA GRAHAM; (GLENN AND RICHARD PAXMAN) COURTESY OF PAXMAN
A SENSE OF CONTROL Scalp cooling does not always work. A good fit is key, and hair loss can occur if there are gaps between the cap and the scalp. Esserman says further research is needed to determine the effectiveness of scalp cooling with specific chemotherapy regimens and how much cooling time is needed. “Four hours pre- and post-chemo seemed unreasonable,” she says. “We tested two hours after, based on drug pharmacokinetics plus a 30-minute cushion. Others showed that one and a half hours works. I’d like to see a time de-escalation study to see how short you can go. The time before and after makes it difficult for cancer centers to operationalize, which makes it hard to bring the price down.” Cost is a major consideration. Manual cold caps are usually rented as a kit with a set of caps, supplies and a portable cooler for $300 to $600 a month. The DigniCap and Paxman scalp cooling machines are typically rented or purchased by cancer centers and patients pay a fee to use them. The cost typically ranges from $1,500 to $3,000 for a full course of treatment. Considered cosmetic, scalp cooling is generally not covered by insurance. Many experts predict that reimbursement will become easier now that the automated systems have received FDA clearance and more people with more types of cancer are using them. Meanwhile, financial assistance is available (see sidebar). Although women with early breast cancer make up the majority of people who have used scalp cooling to date, women with advanced metastatic breast cancer and men and women with other types of cancer have also seen good results. “I did not want people to treat me as a victim. I wanted
LIZ HIGHLEYMAN
Leveling the Playing Field Bethany Hornthal was on a bike ride with Laura Esserman, MD, in 2010 when she first heard about preventing hair loss during chemotherapy. At a lunch stop, Esserman drew a diagram about scalp cooling on a paper napkin, saying it was being used successfully in Europe but needed funding to get off the ground in the United States. Hornthal was working as a consultant to raise awareness and funds for projects at the University of California at San Francisco Breast Care Center. She tapped into philanthropic funding from the Laszlo N. Tauber Family Foundation to support the first U.S. clinical trials of automatic scalp cooling, which led to FDA clearance of DigniCap five years later. But Hornthal thought it didn’t seem equitable that only patients with financial resources would be able to save their hair. “I didn’t want to help bring something to this country that only affluent people could take advantage of,” she says. Hornthal learned about the efforts of Patsy Graham in Austin, Texas, a breast cancer survivor who had used the Penguin Cold Cap and wanted to help others. Graham had set up the nonprofit Cold Cap Assistance Projects and begun providing scalp cooling grants, but before long, the demand grew overwhelming. Hornthal and Graham joined forces, renaming the organization HairToStay. The nonprofit gives
Bethany Hornthal (second from left), Hope Rugo, MD (third from left), and scalp cooling grant recipients Carla Thomas (left) and Stephanie Wells (right) at an October 2017 HairToStay fundraiser in San Francisco
scalp cooling subsidies to people nationwide, raising money from individuals, philanthropic organizations and the hair care industry. Salon-a-Thons in May, in honor of Mother’s Day, and in October, for Breast Cancer Awareness Month, encourage salons across the country to donate proceeds, as part of what Hornthal calls a “hair roots movement.” HairToStay offers subsidies for people with annual incomes up to 300 percent of the federal poverty level—about $36,400 for an individual or $75,300 for a family of four. The usual maximum subsidy is $1,000. Special targeted donor funds provide higher subsidies for patients
treated at specific centers or living in certain regions. Another nonprofit organization, the Cold Capital Fund, offers assistance for people in Maryland, Virginia and Washington, DC. To date, HairToStay has raised more than $1 million and given subsidies to nearly 800 recipients. The goal for 2018 is to provide 1,000 people with the chance to avoid hair loss during treatment. “HairToStay helps level the playing field so that maintaining privacy, identity and a sense of well-being during chemotherapy is not limited to those with means,” Hornthal says. “It’s the difference, when you look in the mirror, of seeing yourself rather than seeing a cancer patient.”
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YOUR TEAM
BY KURT ULLMAN
Financial Peace of Mind
Megan Pienta
STUDIES SHOW THAT AS many as one in three people with cancer delay or refuse treatment because of cost concerns. They don’t want to exhaust their savings or leave their family with a big bill. Financial navigators help cancer patients and their loved ones find resources so they don’t have to decide between getting the care they need and other life necessities.
What are financial navigators? Financial navigators work as advocates for every patient who comes into the cancer center. We help take care of them on many levels, but we especially focus on providing guidance with insurance issues as well as assistance with medical bills and paying for chemotherapy and other types of treatment.
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How do financial navigators assess their patients’ needs? There are many ways to assist people with cancer. The first step is talking with them to find out exactly what their current and future needs are. What are some of the needs financial navigators address? We look into what insurance options are available for patients.
IU HEALTH/MIKE DICKBERND
Megan Pienta is a licensed financial navigator at the Indiana University Health Simon Cancer Center in Indianapolis.
If they have no insurance at all, we try to get them insured. We look at options in the health insurance marketplace and find one that best addresses their individual situation. If they qualify, we help patients with enrollment in Medicaid or other government programs. COBRA is a federal law that lets you keep your group health coverage when your job ends or you are unable to work, usually for at least 18 months. There may be assistance available to help pay COBRA premiums. Even insurance may not address all financial concerns. Patients might have high deductibles or high amounts they must pay out of pocket. Some may reach the highest benefit amount the plan will cover, which could mean they are responsible for expenses going forward. We look into what options are available to meet specific needs. How do financial navigators find needed resources? There are many avenues. Some types of cancer have dedicated foundations. Such organizations can help pay for treatment and other expenses. Availability of funding can change over time as money is disbursed and more comes into their coffers. We track which foundations have funds available and help lead people through the application process. For some medications, we can get co-pay cards. These help with out-of-pocket expenses for co-payments or deductibles that
patients have to pay before insurance starts to kick in. Pharmaceutical companies will often have assistance programs that will supply medication for people in financial need. We can help patients identify and apply for programs that are specific to their needs. For people who currently have insurance, we can answer questions about medical bills, explain how deductibles and out-of-pocket costs work and help patients apply for additional financial assistance, if needed.
help around the house. I look more at ways of paying for treatment, while social workers focus on other aspects. By working together, we hope to make cancer treatment easier for our patients. What’s the most inspiring part of your work? For me, satisfaction comes from connecting with patients on a deep level. When people hear the word cancer, one of the first things they think about is how much it will cost. They come to
When people hear the word cancer, one of the first things they think about is how much it will cost. Do you work with others at the cancer center? At IU Health Simon Cancer Center, financial navigators work closely with social workers. People with cancer often have financial burdens beyond treatment costs, such as food, transportation, lodging and childcare. Many patients travel from outside the immediate area and need a place to sleep. Others may need assistance with childcare or someone to
us already afraid. Sometimes they refuse treatment because they are worried about their family’s financial situation after they are gone. Our patients rely on us to help them pay their bills, get their lifesaving medications and provide peace of mind to them and their loved ones. We connect on a very personal level during the journey we take with them. That is the most rewarding part. ■
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BY ROGER PEBODY
Keeping Fit During Treatment IF YOU’RE EXPERIENCING FATIGUE as a side effect of cancer treatment, you may feel too tired to exercise. However, regular physical activity can actually give you more energy and make you feel less tired. Other benefits of exercise include reduced anxiety and depression, better physical function and improved quality of life. Research also suggests that cancer patients who are more active have a lower risk of relapse and may live longer. That’s why the American Cancer Society recommends that people receiving cancer treatment should be as active as possible. Aim to do both aerobic activities that raise your heart rate and strengthening exercises that help maintain your muscles. If you don’t currently get much exercise, start slowly and build up gradually. Start with low-intensity activities, like stretching and short walks. Split up activities into 15- or 30-minute periods and spread them throughout the week. If you’re very tired, try doing 10 minutes of light exercise—even a small amount of activity is better than none. If you’ve been sitting—at your desk in front of your computer, on the couch watching TV or behind the wheel of a car—for an hour or more, take a break and do something more active. Interrupting long periods of sitting will help keep your muscles, bones and joints strong. Most activities are safe, but it’s important to ask your doctor about restrictions. For example, if you have cancer in your bones, you may need to avoid high-impact exercises that could result in fractures. If you’re receiving radiation, skip swimming because chemicals in pool water can irritate your skin. If chemotherapy has damaged the nerves in your feet, be careful with activities that require balance. You don’t have to buy fancy equipment or join a health club to keep active. There are lots of ways to integrate physical fitness into your daily routine at home and in your neighborhood. The key is to choose activities you enjoy and that fit into your life—that way you’ll keep them going even after you’ve finished treatment. ■ 32 CancerHealth SUMMER 2018 cancerhealth.com
10 TIPS FOR STAYING ACTIVE 1
Take the stairs instead of using the elevator.
Take a walk in your everyday clothes—you don’t need sportswear. 2
Participate in active play with your children, grandchildren or pets. 3
Be more active around the house—get some cooking or chores done. 4
Do some gardening— bending and digging provide a good workout. 5
Perform strengthening exercises using water bottles or cans as weights. 6
7
Walk or bike to work, to shop or to see friends.
8
Follow exercise videos on YouTube.
9
Take a yoga, tai chi or qi gong class.
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Go dancing with friends.
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HOW TO
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A SMART + STRONG PUBLICATION Award-winning consumer health care information
GOOD STUFF
BY MEAVE GALLAGHER
HEAD TO TOE Our latest favorite products to help you look and feel your best
Farm-to-table chef and two-time breast cancer survivor Gina Maisano founded Bétèrre Skin + Care to address skin issues related to cancer treatment. Ideal for massaging into scars, the roll-on Bétèrre Scar Serum (0.3 fl. oz., $26) blends arnica, hemp, sea buckthorn and other botanicals with vitamins C and E. The complete Bétèrre line includes cruelty-free, nontoxic face, body and hair products. Developed by a pharmacist, Udderly Smooth moisturizers help keep your face, hands and feet smooth and soft. Udderly Smooth Extra Care 20 hand and body cream (8 oz., $15) contains 20 percent urea, which relieves dry, cracked skin on the hands and feet—a side effect of some cancer medications. In some cases, your insurance may even help pay for it.
La Roche-Posay’s Anthelios sunscreen line, recommended by thousands of dermatologists, offers formulas for all ages and skin types for year-round protection. Anthelios SPF 60 Melt-In Sunscreen Milk (5 oz., $36) provides broadspectrum UVA and UVB waterresistant protection that’s fragrance-free, paraben-free and tested on sensitive skin.
Did you know you could bring your own examination gown to your next appointment? GetJanes offers gowns you’ll actually want to wear. Janes were developed by Sharon Linder, a uterine cancer survivor who wore hers throughout treatment. Janes Women’s Luxury All Purpose Gown, Plus Size All Purpose Robe and Jacks All Purpose Men’s Travel & Patient Robe (all $67) were designed with coverage, comfort, warmth and durability in mind. 34 CancerHealth SUMMER 2018 cancerhealth.com
Caitlin Kiernan was a beauty editor at the top of her game when she was diagnosed with breast cancer. Her book Pretty Sick: The Beauty Guide for Women With Cancer is her way of “paying forward all the amazing advice, tips and tricks I received during my battle with breast cancer” that helped her keep her head up “during the darkest days of my life.” Pretty Sick (Grand Central Life & Style) is available in paperback, ebook and audiobook formats.
BY MEAVE GALLAGHER
RESOURCES
Financial Assistance CANCER CAN TAKE A toll on more than your day-to-day health—it can also drain your bank account. These organizations offer financial help for a variety of issues, as no one should have to decide between medical treatment and everyday needs. Cancer Financial Assistance Coalition cancerfac.org Database of organizations that provide financial and practical help for people living with cancer. Cancer.net cancer.net/navigating-cancercare/financial-considerations/ financial-resources Links to national and local resources, including housing and travel assistance, help with medication and treatment costs, and other types of financial aid. CancerHawk cancerhawk.com/financial-aidfor-cancer-patients A primer on different types of financial help and other types of assistance; includes a database of support resources.
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Colorectal Cancer Alliance ccalliance.org/get-support/ screening Blue Hope Financial Assistance provides stipends for screening and treatment expenses for qualifying individuals. Emergency Cancer Relief Fund healthwellfoundation.org/ emergency-cancer-relief-fund A fund that helps underinsured individuals get the care and treatment they need.
Healthcare Hospitality Network hhnetwork.org An association of nonprofit organizations that offer lodging and support for the families of people receiving medical treatment away from home. Hirshberg Foundation pancreatic.org/patientscaregivers/financial-aid The Hirshberg Pancreatic Program offers grants to people with pancreatic cancer for transportation and treatment costs, pain medication, home care and childcare. Kaiser Family Foundation kff.org/data-collection/medicaidbenefits A database of Medicaid benefits, searchable by state and sorted by type of assistance. Leukemia & Lymphoma Society lls.org/support/other-helpfulorganizations/financial-resources Listing of financial assistance providers, including groups that help with mortgage, rent and utility bills. Metastatic Breast Cancer Network mbcn.org/finding-financialassistance Provides a list of financial aid
organizations, many for people living with breast cancer. NeedyMeds.com needymeds.org Information on drug company patient assistance programs that help people obtain medications they cannot afford. Patient Advocate Foundation patientadvocate.org Assistance includes legal services, case management, co-pay relief, grant programs and help navigating Medicare. Prostate Cancer Foundation pcf.org/financial-resources A database of financial resources for people with prostate and other types of cancer. Stupid Cancer stupidcancer.org/directories/ money.shtml Directory of aid organizations for young people with cancer; includes scholarships for high school and college students who are living with or survivors of cancer. Vital Options International vitaloptions.org The Selma Schimmel Vital Grant offers assistance to anyone who is living with cancer and in financial need.
cancerhealth.com
SUMMER 2018
CancerHealth 35
LIFE WITH CANCER
BY TOM AND KARI WHITEHEAD
Giving Hope a Chance IT WAS EARLY 2012 when our daughter, Emily, relapsed for the second time since being diagnosed with acute lymphoblastic leukemia two years prior. Chemotherapy hadn’t worked for her, and we had few options left. When we first learned about the CAR-T cell therapy trial at Children’s Hospital of Philadelphia, we hesitated. Phase I clinical trials are generally considered a last resort, we thought—something you do when you don’t have much hope left. But when it became evident that Emily wouldn’t be eligible for a bone marrow transplant, hope was what we needed. On April 17, 2012, Emily received the treatment and became the first child in the world to have her immune system trained to fight cancer. When her bone marrow was tested a few
weeks later, no evidence of cancer cells remained. Almost immediately, Emily’s story received worldwide attention. We have since had the opportunity to travel and make great memories while spreading awareness about the treatment that kept us together as a family. Since Emily got better, everything we do as founders of the Emily Whitehead Foundation is intended to pay it forward and ensure that more kids survive when chemotherapy doesn’t work. We are motivated every day by the children who didn’t have the same chance at hope that we did. Right now, the parents of many children with other types of cancer don’t have hope if their kids relapse. That’s why we do everything we can
Kari, Emily and Tom Whitehead with their dog, Lucy
to give parents a support system and raise money to fund research that will help more kids survive. While the CAR-T treatment Emily received was approved in August 2017, only patients who have relapsed or are resistant to chemotherapy are eligible. By supporting further research, we hope such treatments will not only be developed for all cancers but will become the standard of care—not just a last resort. As of May 2018, Emily is six years cancer-free. While the media attention and being recognized everywhere doesn’t particularly excite her, she understands the importance of talking about being first and is very proud now that the treatment is helping others. With the exception of a B-cell deficiency, a result of the treatment eliminating both healthy and cancerous cells, Emily’s health is normal—something that is not always the case for pediatric cancer survivors. We’re still often asked how Emily is doing. We say that when you see her with her friends, you can’t tell anything ever happened to her. To us, that is what a cure looks like. And that is the happy ending we hope to activate for all children fighting cancer. ■
COURTESY OF EMILY WHITEHEAD FOUNDATION
Tom and Kari Whitehead share how their daughter’s experience with CAR-T therapy motivated them to support research on pediatric cancer immunotherapies.
SURVEY
PAYING FOR CANCER CARE
Cancer treatment and related costs can be a big financial burden. At a time when new cancer therapies are becoming ever more expensive, Cancer Health wants to know how you manage the financial challenges of care.
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Besides cancer drugs, what are your major care-related expenses? (Check all that apply.) ❑ Medications for symptoms or side effects ❑ Alternative or complementary therapies ❑ Products to help me look and feel better ❑ Transportation to care facilities ❑ Lodging away from home during treatment ❑ Childcare during treatment ❑ Other (please specify): ________________
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On average, how much do you spend each month for out-of-pocket health costs? ❑ Less than $100 ❑ $100–$499 ❑ $500–$999 ❑ $1,000 or more
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1 If you have been diagnosed with cancer, what 9 What types of financial assistance have you type was it? (Include all types.) used for cancer care? (Check all that apply.) ______________________ ❑ Free care from a hospital 2 Where are you in the treatment process? ❑ Assistance from a general cancer charity ❑ Assistance from a support group for a ❑ I have not yet started treatment. specific type of cancer ❑ I am currently receiving treatment. I have finished treatment and have no ❑ Other (please specify): ________________ ❑ evidence of cancer. 10 Have you ever used a drug company patient ❑ I finished treatment, but the cancer is still assistance or co-pay program? present or has come back. ❑ Yes ❑ No If yes, please specify: ________________ 3 Have you ever skipped or delayed treatment because of cost? 11 What year were you born? __ __ __ __ ❑ Yes ❑ No 4 How much do you worry about the cost of cancer care? ❑ A lot ❑ Some ❑ Not at all
12 What is your gender? ❑ Male ❑ Female ❑ Transgender ❑ Other
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13 What is your level of education? ❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree ❑ Graduate or professional degree
What type of health coverage do you have? (Check all that apply.) ❑ Employer-based insurance ❑ Affordable Care Act (“Obamacare”) insurance plan ❑ Medicare ❑ Medicaid ❑ No coverage ❑ Other (please specify): ________________
6 What is your monthly insurance premium? ❑ Less than $100 ❑ $100–$499 $500–$999 ❑ ❑ $1,000 or more
14 What is your household income? ❑ Less than $25,000 ❑ $25,000–$49,999 ❑ $50,000–$99,999 ❑ $100,000–$149,999 ❑ $150,000–$199,999 ❑ $200,000 or more 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 #2, 212 West 35th Street, 8th Floor, New York, NY 10001
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