Cancer Health Fall 2018

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Empowerment Through Advocacy Living With Metastatic Breast Cancer

What’s New in Immunotherapy?

Eating Well During Treatment

Is Cancer in Your Genes?

A Melanoma Diary

Trends in Insurance Coverage

Men Get Breast Cancer Too What Is Targeted Therapy?

Latonya Wilson

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CONTENTS

E xclusively on

Cancer Health.com

Carl June, MD, speaks at the 2018 ASCO meeting.

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

COVER: PETER FRANK EDWARDS; THIS PAGE: (JUNE) LIZ HIGHLEYMAN; (“CANCER,” IV TREATMENT AND TYPEWRITER) ISTOCK

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

16 “BUT YOU LOOK FINE!” Latonya Wilson advocates for better understanding of metastatic breast cancer. BY ROBIN WARSHAW Plus: Black women and breast cancer | Men get breast cancer too 22 WHAT’S NEW IN IMMUNOTHERAPY? Experts reveal what’s on the cutting edge. BY LIZ HIGHLEYMAN

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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 Think Pink 4 Cancer News ASCO news: meet your match | fitness trackers for side effects | less is more for early breast cancer | arresting RET | CAR-T for multiple myeloma | lung cancer combos | alternative therapy 8 Voices Peter J. Pitts: Redlining cancer care | Catherine Guthrie: Going FLAT and reclaiming my body

26 Your Team Nancie Petrucelli on genetic testing for you and your family 28 How To Eating well during treatment 30 Good Stuff Products to help you look and feel your best 31 Resources Breast cancer support groups for everyone

10 Basics What is targeted therapy? | Understanding BRCA

32 Life With Cancer Ken Brown hiked Mount Kilimanjaro after pancreatic cancer.

14 Diary Jamie Troil Goldfarb on melanoma and research advocacy

33 Survey Tell us about your experience with cancer treatment.

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FALL 2018

CancerHealth 1

Take the....

SKIN CHECK Pledge

Early Detection Could Save Your Life.

For each person who takes the skin check pledge, L’OrÊal Paris has committed $100 per sign up to support melanoma research, up to $250,000 for 2018.

CureMelanoma.org/Pledge

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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 INTERN Cameron Gorman 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

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Think Pink OCTOBER IS BREAST CANCER Awareness Month, bringing with it the usual proliferation of pink intended to increase awareness and raise funds for research and supportive services.

Breast cancer campaigns often emphasize early detection, which has allowed many women—and some men—to be treated successfully and become long-term survivors. When caught early, before cancer has spread beyond the breast, the five-year survival rate is 99 percent.

But many pink promotions fail to acknowledge people with metastatic, or advanced, breast cancer, for whom the five-year survival rate is closer to 25 percent. As Latonya Wilson describes in her profile on page 16, living with metastatic breast cancer means a lifetime of treatment and reliance on a steady stream of new drugs coming through the development pipeline.

One group that needs no awareness reminders is so-called previvors— people who don’t yet have cancer but carry genetic mutations that dramatically increase their risk. Learn more about BRCA gene mutations that raise the risk of breast, ovarian and prostate cancer on page 13 and the benefits of working with a genetic counselor on page 26.

Breast cancer gets a lot of attention because it’s a women’s issue. But cancers that aren’t associated with a specific identity group need awareness and resources too. On page 14, Jamie Troil Goldfarb shares her experience living with metastatic melanoma and the personal and

public benefits of participating in clinical trials.

Part of Cancer Health’s mission is to offer you the latest information about new treatments on the horizon. Check out our news from the big American Society of Clinical Oncology annual meeting in June (page 4) and see what some of the leading experts in the field think will be the next breakthroughs in immunotherapy (page 22).

This year, when you “Think Pink,” don’t forget to consider the women and men with metastatic breast cancer—and people living with all types of cancer—who need better treatments and, ultimately, cures.

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

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NEWS

BY LIZ HIGHLEYMAN

The following news was presented at the American Society of Clinical Oncology (AS

Meet Your Match Genetic testing of tumors and using the results to guide treatment can lead to longer survival, a recent study shows.

Unlike traditional chemotherapy, which kills fast-growing cells throughout the body, targeted therapies work against cancer with specific genetic characteristics (see page 10). Drugs that work against cancer with certain mutations regardless of location could be especially beneficial for people with rare cancers that receive little research.

Apostolia Maria Tsimberidou, MD, PhD, of the University of Texas MD Anderson Cancer Center in Houston, presented findings from the IMPACT trial, which compared the long-term survival of people treated with matched targeted therapy that was selected by genetic testing and those treated with nonmatched therapy.

The study included more than 3,700 people who had exhausted standard treatment options or had incurable rare cancers. A third had at least one targetable genetic alteration. Within this group, 711 people received matched targeted therapy while the rest received unmatched therapy because no appropriate targeted drugs were available.

Treatment with matched therapy led to higher response rates, slower disease progression and longer survival. The overall response rate was 16 percent in the matched therapy group compared with 5 percent in the nonmatched group. After three years, 15 percent of people in the matched therapy group were still alive compared with 7 percent in the nonmatched group; after 10 years, the overall survival rates were 6 percent and 1 percent, respectively.

“I’m optimistic that in the next few years, we will dramatically improve outcomes of patients with cancer with the increasing use of precision medicine,” says Tsimberidou.

The National Cancer Institute’s NCI-MATCH study is exploring a similar approach, using a test that looks for mutations in more than 140 genes that can be targeted by drugs. Launched in August 2015, the trial has nearly 40 treatment arms and is enrolling patients at more than 1,100 cancer centers and community hospitals throughout the United States.

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GET FIT Wearable activity trackers, such as Fitbit, can help predict how cancer patients will do on chemotherapy.

Jorge Nieva, MD, of the University of Southern California in Los Angeles, and colleagues analyzed data from 65 people undergoing treatment with chemotherapy that causes nausea and vomiting. They were asked to wear a Microsoft Band tracker for nine hours a day for two months. Among the 41 people who actually wore the trackers consistently, only nine recorded more than 60 hours of non-sedentary activity over the course of 60 days. But those who did so were less likely to experience severe side effects and other complications leading to unplanned hospitalization.

The researchers suggested that activity trackers could help identify patients in need of intervention to prevent hospitalization and may predict those who are more likely to report serious adverse events in clinical trials. Hundreds of trials are now incorporating fitness trackers as an objective measure of quality of life.

CO) annual meeting in Chicago in June.

Less Is More for Early Breast Cancer

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A tumor gene test could allow about 70 percent of women with a more easily treatable type of early breast cancer to safely skip chemotherapy, the large TAILORx study showed.

The trial included more than 10,000 women with early-stage estrogen-receptor-positive, HER2-negative breast cancer that was confined to the breast.

About half of women diagnosed with breast cancer fall into this category; they usually undergo surgery and receive estrogenblocking hormone therapy.

Adding adjuvant, or preventive, chemotherapy can reduce the risk of recurrence by a small amount, but most never would have experienced disease progression without it and therefore suffer needless side effects.

After surgery, the women had their tumors tested with Oncotype DX, which analyzes 21 tumor

genes to predict the risk of cancer recurrence. Low-risk women received hormone therapy alone, high-risk women received estrogen blockers plus chemotherapy and those in the middle group were randomly assigned to hormone therapy either with or without chemotherapy.

After nine years of follow-up, 83 percent of intermediate-risk women who received estrogen blockers alone and 84 percent of those who received hormone therapy plus chemotherapy were still alive without having experienced local recurrence, cancer in the opposite breast or metastasis to distant parts of the body. Overall survival was also similar in both treatment groups, about 94 percent.

These findings “will transform care immediately, and for the better,” says ASCO expert Harold Burstein, MD, PhD, of the Dana-Farber Cancer Institute in Boston. “Practically speaking, this means that thousands of women will be able to avoid chemotherapy, with all of its side effects, while still achieving excellent long-term outcomes.”

Arresting RET A new targeted therapy directed against cancer with specific mutations shrank tumors in people with thyroid, lung and other cancers, researchers reported. LOXO-292 works against tumors with mutations in a gene known as RET, which plays a role in cell multiplication. RET changes are most common in thyroid cancers but are also found in a small proportion—2 percent or less—of many other cancer types, including lung, colorectal and pancreatic tumors.

In a Phase I study of 82 patients, the overall response rate was 45 percent for people with RET-mutated medullary thyroid cancer and 77 percent for those with various other types of cancer with RET fusions. Plus, the treatment was well tolerated with few side effects. If LOXO-292 continues to do well in larger trials, it could become part of a new paradigm of treating cancer based on its genetic characteristics, regardless of where it occurs in the body.

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NEWS

BY LIZ HIGHLEYMAN

The following news was presented at the American Society of Clinical Oncology (AS

Checkpoint inhibitor immunotherapy continues to look promising for people with advanced nonsmall-cell lung cancer (NSCLC). Accounting for more than 80 percent of all lung cancers, NSCLC is often diagnosed at a late stage and has a high mortality rate.

Some tumors can turn off cancer-fighting T cells by hijacking the immune checkpoint PD-1, a protein that regulates immune function. Drugs that block the interaction between PD-1 on T cells and its PD-L1 binding partner on cancer cells can release the brakes and restore T-cell response. But they don’t work for everyone; researchers hope that combining them with other medications can help jump-start T-cell activity.

As reported at this year’s American Association for Cancer Research annual meeting in April, the KEYNOTE-189 study showed that adding Keytruda (pembrolizumab) to Alimta (pemetrexed) and platinum-based chemotherapy delayed disease progression and improved overall survival in people with previously untreated metastatic nonsquamous NSCLC, regardless of PD-L1 levels.

At the ASCO meeting, researchers reported that a different checkpoint inhibitor, Tecentriq (atezolizumab), plus the VEGF inhibitor Avastin (bevacizumab) and chemotherapy led to longer overall survival for people with advanced nonsquamous NSCLC. Soon afterward, Genentech announced results from another study showing that

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a combo of Tecentriq plus Alimta and platinumbased chemotherapy led to an improvement in progression-free survival in this group.

For people with PD-L1–positive tumors— Gilberto Lopes, that is, tumors with MD PD-L1 levels of 1 percent or higher— Keytruda alone might be enough. Gilberto Lopes, MD, of the University of Miami’s Sylvester Comprehensive Cancer Center, reported that Keytruda monotherapy led to longer overall survival than platinum-based chemotherapy plus Alimta or paclitaxel in those with PD-L1–positive advanced NSCLC. Survival and response rates were even higher in people with PD-L1 levels above 20 percent and above 50 percent.

“A large number of patients with lung cancer now have a new treatment option with better efficacy and fewer side effects than standard chemotherapy,” Lopes says.

Commenting on the study, Leena Gandhi, MD, PhD, of NYU Langone Health Perlmutter Cancer Center in New York, noted that the benefits of Keytruda monotherapy were largely driven by people with higher PD-L1 levels. It is still not clear whether Keytruda monotherapy or the Keytruda plus chemo combo in her own KEYNOTE-189 study is a better first-line option for advanced NSCLC. In the near future, biomarkers may help doctors predict which patients will benefit from which immunotherapy regimen. “Lung cancer is no longer one size fits all,” she says.

(LOPES) LIZ HIGHLEYMAN

COMBOS FOR LUNG CANCER

CO) annual meeting in Chicago in June.

(HERBS) ISTOCK; (MULTIPLE MYELOMA) JOHN DIGIANNI/DANA-FARBER CANCER INSTITUTE

New CAR-T for Multiple Myeloma A new engineered T-cell therapy has potent activity against multiple myeloma, according to a small Phase I study.

Chimeric antigen receptor T-cell therapy—better known as CAR-T—involves removing a sample of a patient’s white blood cells, reprogramming the T cells to kill cancer and infusing them back into the body. The new therapy, known as bb2121, inserts an artificial receptor that targets the B-cell maturation antigen, which is often expressed on plasma cells that grow out of control in people with multiple myeloma.

Among the 22 participants with relapsed or refractory (nonresponsive) multiple myeloma who were treated with high doses of bb2121, the overall response rate was 96 percent, including 50 percent with complete responses.

The median progression-free survival time was 11.8 months for patients with the longest follow-up.

A larger Phase II trial of bb2121 called KarMMa is now recruiting participants.

INTEGRATIVE NOT ALTERNATIVE A holistic approach using complementary therapies plus standard medical treatment can help manage cancer symptoms and side effects, according to new guidelines from the American Society of Clinical Oncology. An expert panel found that scientific evidence supports several integrative therapies for people with breast cancer, including meditation, acupuncture, massage and yoga.

But a recent study from Yale School of Medicine found that skipping recommended medical treatment in favor of alternatives can be dangerous. The study showed that people who used alternative therapies, such as herbs, homeopathy or specialized diets, were more likely to refuse surgery, chemotherapy or radiation therapy—and those who opted out of standard medical care were twice as likely to die.

“If patients are using these therapies in addition to effective scientifically proven cancer therapies and their doctors are aware of it, we’re comfortable with it,” says ASCO panel cochair Gary Lyman, MD, MPH, of Fred Hutchinson Cancer Research Center in Seattle.

“The only time it becomes an issue is when these are not disclosed or are used instead of conventional effective therapies.” cancerhealth.com

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VOICES

BY PETER J. PITTS

Redlining Cancer Care

Peter J. Pitts, a former Food and Drug Administration associate commissioner, is president of the Center for Medicine in the Public Interest.

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stopped the growth of his cancer. Today, eight years after his initial diagnosis, he is cancer-free and thriving. Is your insurance as good as Abdul-Jabbar’s?

Unfortunately, many people with leukemia won’t be so lucky. CVS Health— the nation’s second largest pharmacy benefit manager, which oversees the drug plans of 65 million Americans— recently rescinded coverage for Tasigna and 130 other specialty drugs.

As a result, millions of people could be denied access to therapies that could save their lives. Instead of prescribing the medicines best suited to patient needs, physicians will be forced to recommend treatments on the formulary.

Pharmacy benefit managers, or PBMs for short, administer prescription drug plans offered by employers and health insurers. In recent years, these organizations have gotten stingier about which drugs they will cover.

Back in 2012, the nation’s largest PBM, Express Scripts, excluded no medicines from its list of covered drugs, while CVS

Peter J. Pitts

Health left off about 30. Today, they both exclude more than 200, including some cuttingedge cancer treatments.

Anyone who paid attention to President Trump’s May 2018 press conference or read the White House “Blueprint to Lower Drug Prices” understands that drug pricing involves a whole ecosystem that includes manufacturers and multiple intermediaries. Games are being played, and patients are generally losing.

Drug coverage denials are a deadly prescription for people with cancer. It’s about time for a full-court press against this callous behavior. ■

COURTESY OF PETER J. PITTS

WHAT WOULD YOU SAY IF your chances for successful cancer treatment depended largely on your ZIP code? That’s what happens in England, where patients are at the mercy of the health care resources available in their immediate geographic area.

Want the latest cutting-edge diagnosis and treatment? You’d better hope the local oncologist has had time to read some journal articles or attend a conference or two. Need to have a complicated tumor removed? You’d better hope your local general surgeon is up to the job.

Now replace “ZIP code” with “insurance policy” and you’ll better understand what’s happening in the United States.

One of the harsh lessons people with cancer have learned from the Affordable Care Act is that “having health insurance” isn’t the same thing as “having access to health care.”

Consider NBA great Kareem Abdul-Jabbar. As it turns out, his toughest fight wasn’t on the basketball court.

In his early 60s, the six-time NBA champion was diagnosed with leukemia. Fortunately, Abdul-Jabbar had access to state-of-the-art medications, including the advanced drug Tasigna (nilotinib), which

BY CATHERINE GUTHRIE

VOICES

Reclaiming My Body

In her new book, FLAT, journalist Catherine Guthrie recounts her experience navigating two bouts of breast cancer and cultural expectations of femininity.

ADRIANNE MATHIOWETZ

In this excerpt, a nurse talks with Guthrie, her mother and Guthrie’s partner, Mary, in the hospital room after her double mastectomy.

THE NURSE REACHED DEEP into the bottom of her cart and returned to my bedside with two cottony white footballs. She tugged open the neckline of my camisole and began to stuff one of the footballs into place.

As she pushed and pulled, my arms braced against the bed.

“Um, wait,” I said. “I don’t… really.”

“What?” she said.

“I don’t really…”

She drew back, parked her hands on her hips. “Most ladies won’t leave the hospital without their breast forms,” she said.

“No really, I’m fine,” I said.

“Well, I’ll just leave ’em here at the foot of the bed, and you can take ’em on home,” said the nurse. “You paid for ’em so you might as well keep ’em.” I got the feeling she wasn’t the kind of woman who liked leaving a job half done, but she seemed to know she was outnumbered and left the room.

When we could no longer hear the rattling of the cart and the squeak of her shoes in the hall, we exhaled. I want to say the three of us shared a muchneeded laugh, that my mom squinted her eyes and leaned

her head back, covering her open-mouthed giggle with her hand. I want to say that Mary let out one of her spirited “ho-HOs,” the sound of delight and surprise she often made before doubling over in laughter, but instead my memory is clouded by the strangeness of the moment.

Staring at the breast forms at the foot of the bed, I couldn’t stop thinking about how they were three times bigger than the peach-sized breasts I’d sacrificed the day before. How the mastectomy nurse, like the breast surgeons, hadn’t paused to ask me how I wanted to present my body to the world, but moved on autopilot to return their definition of femininity to my now genderambiguous chest.

A week later, I read Audre Lorde’s account of her mastectomy in 1978. On the day after her mastectomy, Lorde, a poet and breast cancer activist, was visited by a “kindly woman” who offered her “a very upbeat message and a little prepared packet containing…a wad of lamb’s wool pressed into a pale-pink breast-shaped pad.”

Of the scene, she wrote: “Breast

Catherine Guthrie

prostheses are offered to women after surgery in much the same way that candy is offered to babies after an injection.”

I was struck by how little had changed in thirty years. How little space women were given for mourning. How strong the medical community’s insistence was that a woman’s body conform. ■ Excerpt from FLAT: Reclaiming My Body From Breast Cancer

by Catherine Guthrie. Reprinted with permission. Copyright © 2018 Skyhorse Publishing.

All rights reserved.

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BASICS

BY LIZ HIGHLEYMAN

What Is Targeted Therapy?

IN RECENT DECADES, CANCER treatment has evolved rapidly from surgery, radiation and traditional chemotherapy to targeted therapies that attack specific types of tumors and immunotherapies that help the immune system fight cancer.

Targeted therapies work against cancer with specific gene mutations or other unique characteristics that make cancer cells different from normal cells.

Usually, this type of treatment interferes with processes needed for cancer to grow and spread.

Researchers have identified hundreds of so-called driver mutations that contribute to the development of cancer. Many of these either boost the activity of genes that cause uncontrolled cell growth (oncogenes) or turn off tumor suppressor genes.

Some targeted therapies are monoclonal antibodies that are administered by IV infusion (usually indicated by the suffix -mab). Others are small molecules that can be taken as pills (usually indicated by the suffix -ib).

Unlike traditional cytotoxic chemotherapy, which kills both cancer cells and fast-growing healthy cells throughout the body, targeted therapy acts specifically against cancer.

Therefore, targeted therapies are often better tolerated than chemotherapy because they don’t harm most normal cells.

However, some targeted

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medications interfere with normal biological processes and can cause difficult side effects.

For example, epidermal growth factor receptor (EGFR) inhibitors interfere with normal skin growth, which can lead to rashes and cracks in the skin.

TYPES OF TARGETED THERAPY Many targeted therapies interfere with cell communication or signaling pathways that regulate cell division and death. Genetic mutations or gene fusions can cause receptors and other proteins involved in these processes to be overexpressed, or overactive, in cancer cells.

One widely used type of targeted therapy is kinase inhibitors, drugs that block the action of enzymes known as protein kinases. These enzymes carry out a chemical reaction called phosphorylation (adding phosphates to molecules), a

necessary step in many biological processes. Phosphorylation can modify proteins in a variety of ways—for example, increasing or decreasing their activity.

Protein kinases modify proteins at specific locations, often at the amino acid tyrosine. Kinases are involved in many signaling pathways that control cell proliferation. Overactive kinases can lead to uncontrolled cell growth. Some targeted drugs inhibit a specific kinase, while others are multikinase inhibitors.

Gleevec (imatinib), one of the first targeted therapies, acts on an abnormal tyrosine kinase seen in a certain type of leukemia.

EGFR is a receptor tyrosine kinase associated with lung, colorectal and other cancers.

Human epidermal growth factor receptor 2 (HER2), another tyrosine kinase, is overexpressed in about 20 percent of breast cancers, making them susceptible

ISTOCK

Precision medicine matches patients with the treatments most likely to work for them.

to HER2 blockers like Herceptin (trastuzumab).

Cyclin-dependent kinases (CDKs) bind to cyclins, proteins that regulate the cell division cycle.

New targeted therapies for breast cancer—Ibrance (palbociclib), Kisqali (ribociclib) and Verzenio (abemaciclib)—target both CDK4 and CDK6 mutations.

Normal cells have mechanisms to repair damage to their genetic material—mechanisms that can malfunction in cancer cells. PARP inhibitors, such as Lynparza (olaparib), block a protein that plays a role in DNA repair. Inhibiting PARP leads to more DNA breaks, which can halt cell division. People with BRCA mutations—which raise the risk of breast and ovarian cancer—do not make proteins that fix this DNA damage, so BRCA-related cancers are susceptible to these drugs.

Some of the first targeted therapies were angiogenesis inhibitors, drugs that prevent the

formation of new blood vessels to supply a growing tumor.

Some tumors produce signals that stimulate angiogenesis, including vascular endothelial growth factor (VEGF). Avastin (bevacizumab) binds to VEGF itself, while Nexavar (sorafenib) targets its receptors.

Some targetable changes occur at low levels in many different cancers—for example, gene fusions or mutations involving RET and TRK. These occur in about 1 percent of all cancers but more often in certain rare ones. The experimental drug larotrectinib targets cancer anywhere in the body with TRK fusions.

MAKING MORE MATCHES Targeted therapies work very well for some people, but they are ineffective for others who may have the same type of cancer but a different genetic profile. And over time, cancer cells can become resistant to

targeted therapies, meaning they will stop working. The best results may come from combining targeted therapy with chemotherapy or immunotherapy.

Targeted therapy has led to genetic testing to help guide treatment. These tests look for targetable, or actionable, mutations in a removed tumor or biopsy sample, enabling doctors to select which medications are most likely to work.

A recent study showed that patients who used matching targeted therapies survived longer than those who did not.

Many cancer-related mutations do not yet have matching medications. Researchers continue to look for additional targetable cancer characteristics and drugs that will work against them in the hope of making precision medicine available to more people. Clinical trials of new targeted therapies can be a good way to obtain promising experimental treatments. ■

TARGETING LUNG CANCER Non-small-cell lung cancer (NSCLC) offers a good example of the practical use of targeted therapy. About half of adenocarcinomas (the most common type of lung cancer in the United States) carry KRAS, EGFR, ALK or several less common gene mutations. Some occur more often in women and people who never smoked.

Up to 15 percent of these cancers have EGFR mutations.

EGFR targeted therapies include Iressa (gefitinib) and Tagrisso (osimertinib). ALK gene alterations are less common; matching drugs include Alecensa (alectinib), Xalkori (crizotinib) and others.

Xalkori also works against rare ROS1 gene alterations.

Other uncommon mutations

in lung cancer include BRAF, HER2 and RET. Unfortunately, the most common lung cancer mutation, KRAS, has proved difficult to target and does not yet have a matching therapy. In addition, over half of lung cancers may carry other gene alterations that are not well understood and may offer targets for future therapies.

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CAN15786-00_p025_HouseAd.pgs 05.17.2018 16:42

BY LIZ HIGHLEYMAN

BASICS

Understanding BRCA

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Genetic mutation raises the risk of breast, ovarian and prostate cancers.

BRCA (“BReast CAncer”) genes influence susceptibility to cancer. BRCA1 and BRCA2 are known as tumor suppressor genes. Normally, they help prevent cancer by repairing broken DNA. But in people with certain BRCA mutations, DNA damage cannot be fixed, which allows cells to grow out of control.

Women with harmful BRCA mutations have a much higher likelihood of developing breast and ovarian cancer. While about 12 percent of all women will develop breast cancer during their lifetime, this rises to around 70 percent for those with BRCA1 or BRCA2 mutations, according to the American Cancer Society.

The risk of ovarian cancer increases from less than 2 percent to over 40 percent for women with BRCA1 mutations.

Women with BRCA mutations are more likely to develop breast or ovarian cancer at a younger age. Those with BRCA1 mutations also have a higher risk of triplenegative breast cancer, which can be more aggressive and harder to treat because it does not respond to widely used medications. But new drugs called PARP inhibitors work well against BRCA-related cancers.

BRCA mutations also raise the risk of breast and prostate cancer in men. In addition, these mutations increase susceptibility to pancreatic cancer and may play a not-yet-recognized role in

triggering other cancers.

BRCA mutations are uncommon in the general population. Less than 1 in 10 women with breast cancer and 15 percent of those with ovarian cancer have these mutations. BRCA1 changes are seen most often in people of Ashkenazi Jewish descent (up to 10 percent). For other groups, the risk is under 5 percent.

BRCA1 and BRCA2 gene mutations are hereditary. If either parent carries a BRCA mutation, there is a 50 percent chance that his or her children will have it too.

BRCA screening is not routinely done for the population as a whole. But people who develop early or aggressive breast, ovarian, prostate or pancreatic cancer may undergo testing to help guide treatment, and their family members can be tested to determine whether they are also at risk. (See page 26 to learn more about genetic counseling.)

People with a known BRCA

mutation should receive breast cancer screenings starting at a younger age—as early as 25—and repeat them more frequently.

Experts recommend both MRI imaging and mammograms for high-risk women. Likewise, men with these mutations should consider earlier and more frequent screening for prostate cancer. Unfortunately, no good screening methods are currently available for ovarian cancer.

Prevention options for people with harmful BRCA mutations include prophylactic medications such as tamoxifen to stop the development of hormonereceptor-positive breast cancer.

Some women undergo mastectomy (removal of the breasts) or removal of the ovaries and Fallopian tubes before cancer develops. Exercise, eating a balanced diet and maintaining a healthy weight can help prevent cancer in people with or without increased genetic risk. ■

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DIARY

AS TOLD TO MEAVE GALLAGHER

A Melanoma Diary Jamie Troil Goldfarb, 40, is a patient advocate and works in public relations.

She lives in Takoma Park, Maryland, with her husband and son.

I had a birthmark on my left thigh that had changed over time. When I finally went to the dermatologist, it turned out to be Stage II melanoma.

I had it removed. With clear margins, clear lymph nodes and clear scans, everything seemed fine.

November 2008 I got the first of three infections at my surgical site. My primary care physician prescribed me antibiotics, and the infection went away.

December 2009

After my third infection, the surgeon found a melanoma mass—Stage III—in the deep tissue, so I had another surgery. I had clear scans again.

At the time, there wasn’t really anything to do for Stage III melanoma but watch and wait.

January 2010 I got pregnant with our son, Kai. He was born in October.

January 2011 My oncologist suggested we do a PET scan before I returned to work after maternity leave. The scan showed Stage IV melanoma in my liver and pancreas. I started a blog, Melanoma Mom, to raise awareness and keep my family informed.

My husband, Jeff, and I were working in recruitment for clinical trials, so we had a lot more information than the average patient. Clinical trials are not last-ditch efforts. They represent the best access to the most cutting-edge treatments. It wasn’t about deciding whether a clinical trial was the right thing to do—it was about which one to try.

We talked to melanoma experts across the country about what order to try treatments—some

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can cause long-term side effects that make you ineligible for other trials. Melanoma is a personalized cancer that your body can recognize and try to fight, which is why immunotherapies can be effective. I found out I was eligible and joined a tumorinfiltrating lymphocyte (TIL) trial at the National Cancer Institute (NCI) in Rockville, Maryland.

February 2011 At NCI, they harvested lymphocytes from one of my tumors because those white blood cells knew how to recognize and attack the cancer. Then they genetically engineered the cells to express interleukin-12 (IL-12)—a naturally occurring anticancer agent—upon contact with tumors. The treatment basically reprogrammed my immune system to find and fight tumors.

While the cells were growing, NCI put me on a trial of high-dose interleukin-2 (IL-2). I received IV infusions every eight hours for as long as I could tolerate it. After four days, I’d have some time to recover before going back for another round.

IL-2 stimulates a full-body immune response in the hope that the immune system will stumble upon a tumor and attack it. It makes your immune system go crazy. All my skin from my head to my neck peeled off four times. I had rashes and itching, hallucinations, horrible nightmares, copious vomiting and diarrhea—all that fun stuff.

April 2011 I underwent four rounds of IL-2, two in February and two in April. My first scans showed it was working! The tumors in my liver and pancreas had shrunk by 45 percent. That month, I saw a lot of Steven Rosenberg, MD, head of the surgical team at NCI, who pioneered many existing melanoma treatments. It was very reassuring.

(SNAPSHOTS) COURTESY OF JAMIE TROIL GOLDFARB

January 2007

August 2011

Scans in May, June and July showed that the IL-2 was shrinking the tumors in my liver and pancreas.

But my August scan showed 40-plus subcutaneous tumors all over my body. It was time for the TIL trial.

September 2011

The TIL process was a one-month inpatient procedure. It began with five days of high-dose chemotherapy to kill off my existing immune cells. Then they administered the new genetically engineered cells. The chemo side effects were nowhere the awfulness of the IL-2. My hair started to fall out, so I got my head shaved. Jeff got his shaved too.

December 2011

Monthly scans showed that the TIL therapy wasn’t working. I wasn’t ready to consider new treatment options. I felt like my body needed more time to respond. By December, I could feel some of the tumors from the outside—they were shrinking.

January 2012 My scans confirmed that the tumors really were shrinking. The doctors couldn’t explain my body’s delayed response. But I was only the 15th person to receive this treatment, so they didn’t have all the answers. That’s the point of clinical trials—to help researchers fine-tune treatments.

December 2013 The tumors kept shrinking. In 2013, I had my first clear scan. Through my blog, patients started contacting me, people who had been told by their doctors to get their affairs in order, with no conversation about clinical trials. Only 5 percent

From left: Jamie Troil Goldfarb and husband Jeff Goldfarb in 2011; with son Kai in 2013; with Kai and Jeff in 2014

of people with cancer participate in trials. Doctors often wait until patients have no additional options before they discuss them—that’s way too late.

August 2016

When I was diagnosed, Stage IV melanoma had a five-year survival rate of 14 percent. Every single day, I asked myself, “Am I going to get to walk Kai to his first day of kindergarten?” In August, I did!

February 2018

After this month’s clear scan, they moved me to an annual monitoring schedule. Kai is starting second grade this year.

July 2018

I’ve worked with the Melanoma International Foundation, the Melanoma Research Alliance and the Melanoma Research Foundation to get information to patients and influence how doctors talk to patients about trials. I became a research advocate for NCI. I speak about the need for easy access to patientfriendly information. People are dying because they don’t know studies exist or how to access them. If your oncologist hasn’t told you about clinical trials, you need to find out about them on your own. Be your own advocate. Questioning your doctor’s advice is not your first reaction when you’re diagnosed with a life-threatening illness, but it’s part of being an empowered patient. Clinical trials save lives. They saved mine. ■

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Latonya Wilson advocates for better understanding of metastatic breast cancer and more outreach to African Americans.

BY ROBIN WARSHAW

The doctor had treated Wilson since early 2008, when she was diagnosed with Stage II breast cancer at age 32.

Five years after that, a small tumor was found in the same breast, and Wilson had a double mastectomy to remove both breasts.

Th is time, the tests for the cough showed that the

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cancer had spread into her lung, meaning she had Stage IV, or metastatic, breast cancer—the most advanced stage of the disease.

“I knew it was gonna be a lifetime of treatment, though I didn’t know what that treatment was gonna be,” says Wilson.

PETER FRANK EDWARDS

LATONYA WILSON, A 42-YEAR-OLD FORMER U.S. ARMY STAFF sergeant, was working in Iraq for a defense contractor in the spring of 2016 when she first developed a bad cough and shortness of breath. The problem persisted during her vacation back home in South Carolina, so she told her oncologist about it.

Latonya Wilson has been living with breast cancer since 2008.

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“I got the results the day I was flying back to Iraq,” she recalls. “I came to my mom’s house and told them what happened. I wasn’t crying. I was just sitting there thinking.”

Everyone else was crying.

“I couldn’t deal with that,” she adds. “I said, ‘When y’all finish crying, I’ll come back home.’” She flew out that night.

Instead, she was treated with chemotherapy and radiation, and she took tamoxifen for five years to block estrogen.

After chemo and radiation, she returned to Afghanistan.

In late 2013, when Wilson was 37 and working in Kuwait, a doctor found the small tumor that led to the double mastectomy. Wilson started working again but says, “I was a little insecure about not having breasts,” so she returned to the United States to start a new life in Houston.

EARLY TREATMENT Wilson got her first breast cancer diagnosis while working in Afghanistan. African-American women younger than 40, as Wilson was then, have a higher risk of breast cancer than other young women (see sidebar next page).

She saw a local medic about a breast lump in September 2007 and was sent to doctors at a hospital in Dubai. “They assured me it wasn’t anything,” she says, so she waited until her December vacation to have the lump removed in Dubai and then flew back home to the United States.

Days later, Wilson received an email telling her she had breast cancer. She quickly found an oncologist in Lexington, South Carolina, near her family. More tests discovered cancer in three of her underarm lymph nodes.

The breast cancer was hormone-receptor positive, meaning the hormones estrogen or progesterone could make any remaining cancer cells grow (see box below).

Wilson’s oncologist advised her to have a total hysterectomy and ovary removal to reduce hormone production. “I didn’t want to do that,” Wilson recalls, “because I didn’t have children and I wanted to have children.”

COMMUNITY ADVOCACY In Texas, Wilson started the Cherished Hearts Breast Cancer Foundation and spoke at churches, women’s empowerment meetings and fundraising walks. She talked with patients and distributed brochures about breast cancer.

“My main focus at that time was the African-American community,” Wilson says. She felt that African Americans often knew little about breast cancer because they had insufficient information and support resources available to them and because their families traditionally did not talk about cancer. “I was trying to educate people on breast cancer, on getting checked, on what you do if something happens,” she says.

Wilson’s advocacy work helped with her decision not to have surgery to rebuild her breasts. “At first, I didn’t want any more surgeries. I was comfortable with it,” she says. A Houston doctor suggested she might want breast reconstruction because she wasn’t married yet. “I guess she figured a guy probably would have had a problem with me being breastless,” Wilson says.

She began reconsidering her decision to stay flat. Then she met a young woman who couldn’t afford reconstruction. (Some health plans and Medicaid in certain states don’t cover it.)

Breast cancer is classified by the kind of receptors “The young lady thought she was ugly and it expresses. A majority of breast cancers carry she wasn’t a woman. That became my motireceptors for estrogen or progesterone, and vation to say, ‘You know what? I don’t need treatment usually includes hormone-blocking it,’” Wilson says. “I’m showing other women drugs such as tamoxifen. About 20 percent of that if you can’t afford certain things, it’s OK. tumors express the HER2 (human epidermal Breasts don’t make us female. Regardless of growth factor 2) receptor and can be treated how your body changes, we’re still here and with HER2 inhibitors like Herceptin (trastuzumab). we’re still alive.” She describes herself now as Triple-negative breast cancer doesn’t express “blessed, breastless and beautiful.”

any of these receptors, making it harder to treat, but new drugs are being developed for this type of cancer.

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MOVING FORWARD After learning she had metastatic breast cancer in 2016, Wilson told her employer

ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

TARGETING TUMORS

Black Women and Breast Cancer BREAST CANCER AFFECTS all population groups, yet age, race, ethnicity, income, insurance coverage and other factors influence who will develop cancer and who will survive.

Although the overall rate of breast cancer is similar for Black and White women, AfricanAmerican women are 42 percent more likely to die from the disease.

Other disparities for AfricanAmerican women compared with White women include a higher rate of breast cancer before age 40, a greater likelihood of being diagnosed at a late stage and an increased risk of having triple-negative breast cancer, which tends to be more aggressive.

The biological reasons for breast cancer disparities among African Americans are not well understood. Triplenegative breast cancer, which makes up 15 to 20 percent of all breast cancers, is twice as common among Black women and is often diagnosed at a younger age.

Women with triple-negative disease are more likely to have BRCA gene mutations, an inherited factor that increases the risk of breast and ovarian cancer (see page 13). Yet despite their higher rates of triple-negative breast cancer and younger average age at diagnosis, Black women are less likely to be referred for genetic testing than White women.

“The quality of care and where you get your care is very important,” says Lucile L. Adams-Campbell, PhD, associate director for minority health and health disparities research at Georgetown Lombardi Comprehensive Cancer Center in Washington, DC. Care choices may be limited by poverty, lack of adequate insurance, family situation, lack of transportation and living in an area without good services.

Black women very often experience longer delays between diagnosis and the start of treatment. A recent study at an Ohio cancer center found that it took 62 days for breast cancer treatment to begin for African-American women compared with 36 days for White women. That difference is a concern because a greater proportion of the Black women were diagnosed with positive lymph nodes, a sign of aggressive or advanced disease.

Provider bias can also contribute to differences in outcomes, Adams-Campbell says. “You might not be offered a clinical trial as a Black or minority person. They might think that you won’t want to do it or you’re not interested or you won’t complete it—without even knowing the individual.”

Cultural beliefs, too, may interfere with prompt care.

Some African-American families never talk about cancer, even when it affects a family member.

Black women may think they are at low risk and ignore symptoms, or they may take a fatalistic view of their future.

To reduce the number of African-American women diagnosed with late-stage breast cancer, Adams-Campbell urges keeping to a schedule of regular screenings. New guidelines from the American College of Radiology and Society of Breast Imaging may help with that goal. The guidelines recommend that all women should have a breast cancer risk assessment by age 30, but this especially holds for those at high risk, including Black women and women of Ashkenazi Jewish descent. That assessment would determine whether women should receive mammograms before age 40, the age at which women of average risk are advised to start screenings.

“When a woman comes in and says she has had a lump for a long time and has delayed seeking treatment because she almost didn’t want to know what the answer was—that to me is one of the most serious issues that can arise,” says Adams-Campbell.

“Don’t let fear destroy your life.”

—Robin Warshaw

“BREASTS DON’T MAKE US FEMALE. REGARDLESS OF HOW YOUR BODY CHANGES, WE’RE STILL HERE AND WE’RE STILL ALIVE.”

she couldn’t continue working overseas. She returned to South Carolina and, still hoping to become pregnant someday, took hormone-blocking medication for a year until finally deciding to have a hysterectomy and ovary removal. Tests showed cancer in one of the ovaries.

The cancer was gone for a while but reappeared in Wilson’s lung this past April. She is now being treated with letrozole, a hormone-blocking drug known as an aromatase inhibitor, and Ibrance (palbociclib), a targeted therapy that blocks CDK4 and CDK6, two proteins that play a role in regulating cancer cell growth. She feels good but says she is a little tired from the treatment.

Today, there are more therapies for metastatic breast cancer than ever before, with new ones currently being developed. When one treatment stops working or its side effects become too difficult to tolerate, another option is often available. Joining a clinical trial can be a good way to access the latest experimental therapies.

Wilson is now engaged. When she met her fiancé, she told him she had metastatic breast cancer. “He said, ‘OK,’ and laughed it off. He understood—but he didn’t understand,” she says. “So I explained to him and he said, ‘But you look fine!’ And I said, ‘What’s cancer supposed to look like?’”

In June, Wilson and her fiancé went to Disney World with more than a dozen of her relatives. Their wedding will take place in November, soon after she turns 43. “I found love after Stage IV,” she says.

BUILDING SUPPORT Wilson continues to advocate for people with breast cancer in South Carolina. At the hospital where she gets treated, “the doctors are doing their job, but the educational part is not there,” she says. When she met the hospital’s breast cancer manager, Wilson bluntly asked, “Where were you when I first got diagnosed at 32?” The facility has some helpful resources, she says, but not all patients hear about them.

As an example, she talks about the visit she and the breast cancer manager made to the hospital’s breast cancer support group. “I was the only African American there. I

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asked her, ‘Are y’all just letting the Caucasian people know [about the group] and not the African Americans?’

This is why we say it’s unfair to the Black community.

Why do they know and we don’t know? It’s not about just one type of patient.”

Wilson attends conferences and advocacy training offered by national organizations such as Living Beyond Breast Cancer (LBBC) and the Young Survival Coalition (YSC). She distributes educational material from both groups at community events and at the hospital. She is a YSC state leader, and as an LBBC volunteer, she connects with others living with Stage IV breast cancer. She works with the African-American outreach program for the Metastatic Breast Cancer Project, which encourages people with advanced cancer to participate in research.

She is also completing courses for her bachelor’s degree in human resources.

Wilson’s advocacy work led to the formation of a monthly support group. Members come from the South Carolina towns of Columbia and Sumter and are African American, White and Hispanic. “The community doesn’t stop in just one place—it’s everybody,” Wilson says.

Members talk about their concerns and help local patients who need rides to medical appointments or help paying overdue bills.

“People need to come together and realize that this cancer thing is taking a lot of us—how can we cope with it?” she says. “Everybody’s got something. Some have high blood pressure, some have diabetes. I have cancer. I’m gonna roll with it.” ■

Men Get Breast Cancer Too LIKE WOMEN, MEN HAVE susceptible breast tissue that can develop cancer. About 2,550 men will be diagnosed with invasive breast cancer and about 480 will die of it this year, according to the American Cancer Society.

Unlike women, who are advised to get regular mammograms, men usually discover they have breast cancer when they feel a lump or experience symptoms such as discharge from a nipple.

“Men don’t think they have breasts—they have chests,” says Bret Miller, who started the Male Breast Cancer Coalition

after his own diagnosis. “Men need to realize they do have breast tissue and they can get breast cancer. They should do self-exams like women do.”

At age 17, Miller felt a lump in his breast, but doctors told him it was probably calcium buildup.

Seven years later, after he got health insurance through his job, he had a mammogram, the lump was removed and it was found to be cancerous.

Miller, now 32, is unusual: Most men with breast cancer are age 60 or older. Those with BRCA gene mutations or a family history of breast cancer are at higher risk.

Men with breast cancer often don’t receive optimal treatment, according to a recent study.

Fatima Cardoso, MD, and colleagues with the International Male Breast Cancer Program analyzed nearly 1,500 men diagnosed with breast cancer.

They found that although half had small tumors, most underAgostinho Branco, 62, of Porto, Portugal. From a series of portraits of men with breast cancer by Lisbon-based photographer Jose Ferreira.

PHOTOGRAPHY BY JOSE FERREIRA

went mastectomy rather than breast-conserving procedures, such as lumpectomy.

Male breast cancer is usually estrogen- and androgenreceptor positive (see box on page 18). But men are less likely than women to have HER2-positive tumors and fewer than 1 percent have triple-negative breast cancer.

Although more than 90 percent of the men in this study had estrogen-receptor-positive tumors, just 75 percent received hormone therapy to prevent cancer recurrence.

In 2010, Miller underwent a mastectomy and removal of nearby lymph nodes. He was treated with the estrogen blocker tamoxifen but stopped after six weeks because of side effects such as hot flashes. He now takes anastrozole, a drug that stops estrogen production.

Most clinical trials of breast cancer drugs don’t include men, and little is known about how well new types of targeted therapy might work for them.

Men may also feel left out by breast cancer treatment facilities and support programs geared toward women.

“Sometimes it can feel emasculating because it’s a disease associated with women,” Miller says. His message: “It’s not something to be embarrassed about. You are not alone—there are other men out there who are facing the same fight.”

—Liz Highleyman

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Immune cells attack a cancer cell.

WHAT’S NEW IN

IMMUNOTHERAPY? We asked the experts what they think will be the next big breakthroughs. BY LIZ HIGHLEYMAN

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whose immune system is not so beaten up by chemotherapy and radiation,” predicts Jeffrey Bluestone, PhD, president and CEO of the Parker Institute for Cancer Immunotherapy. “I think in five years we’ll be seeing a great deal of success in solid tumors,” he says.

TURNING COLD TUMORS HOT The immune system has evolved to detect and destroy abnormal cells, but cancer has devised ways of hiding from and turning off these immune responses.

T cells, especially the subset known as CD8 cytotoxic T lymphocytes, are the main soldiers in the fight. Immune checkpoints, like PD-1, act as a brake on T-cell activity— a safeguard against attacks on normal cells. Some cancers can hijack these proteins to disable immune responses; checkpoint blockers release the brakes.

But T cells need to be present in a tumor for this approach to work. Checkpoint inhibitors work best against “hot,” or inflamed, tumors that have many mutations and produce abnormal proteins, known as neoantigens, that attract T

ISTCOK

IMMUNOTHERAPY HAS BROUGHT ABOUT dramatic changes in oncology as treatment shifts from surgery, radiation and chemotherapy to precision targeted therapies and immunotherapies.

“Boosting your own immune system to fight cancer has revolutionized treatment,” says Lewis Lanier, PhD, of UCSF Helen Diller Family Comprehensive Cancer Center. “After years of basic research to discover how the immune system works, we can now use this knowledge to treat cancer—and we’re only in the beginning stages.”

Today’s immunotherapies don’t work for everyone or for all types of cancer. Fewer than a dozen immune-based medications are currently approved. Across all cancers, checkpoint inhibitors work only about 25 percent of the time. And the current CAR-T therapies work only for blood cancers, like leukemia and lymphoma, not the common solid tumors responsible for most cancer deaths.

But there’s much more on the horizon, with over 1,000 studies testing combinations of immune-based therapies.

“We’re likely to see more response as we treat patients

(LANIER) COURTESY OF UCSF; (DISIS) COURTESY OF UNIVERSITY OF WASHINGTON

breast cancer who received Keytruda cells. Approved checkpoint blockers plus chemotherapy prior to surgery had work well, for example, against melaa complete response rate of 60 percent, noma, some lymphomas and some lung, compared with 20 percent for those who bladder, kidney and liver tumors. used chemotherapy alone. Another However, these drugs usually don’t study showed that while the PD-L1 work for “cold” tumors, which include checkpoint inhibitor Tecentriq (atezolimost breast, prostate, pancreatic and zumab) shrank breast tumors in 7 percent brain cancers. This could happen beof previously treated women, the response cause there aren’t enough T cells getting rate rose to 26 percent for those being into the tumor, the cells are exhausted treated for the first time. or something in the tumor microenvironDisis was part of a team that analyzed ment is suppressing their activity. over 10,000 tumors from 33 types of “Checkpoint blockade focuses on the cancer, leading to the identification of tail end of the cancer immunity cycle— six distinct immune subtypes. a lot of steps have to happen before T “One tumor subtype has all the right cells and tumor cells interact,” explains things going on. Across every type of Heather McArthur, MD, MPH, of cancer, if you have that immune genoCedars-Sinai Medical Center. “Many type, you will do well. Another subtype efforts are looking to alter not just the is immunologically silent,” she says. relevant immune cells but also the micro“Now we’re moving to a point where environment in which those interactions we’re better able to figure out which are taking place.” combination of immune-based therapies The old standbys chemotherapy and we could use for your tumor type.” radiation play a new role in immunoOne tumor subtype was rich in transtherapy: improving treatment response forming growth factor beta (TGF-β), a by increasing tumor inflammation. And some targeted therapies, such as CDK4/ cytokine that inhibits killer T cells and CDK6 inhibitors and PARP inhibitors, Lewis Lanier, PhD (top), and is associated with cancer progression.

Nora Disis, MD appear to boost immune activity.

“There are many negative regulatory McArthur’s group showed that the factors in the tumor microenvironment, PD-1 checkpoint blocker Keytruda (pembrolizumab) plus and just getting the T cells there may not be enough,” says radiation therapy led to tumor shrinkage in 18 percent of James Gulley, MD, PhD, chief of the Genitourinary Maligwomen with metastatic triple-negative breast cancer, nancies Branch at the National Cancer Institute. “With all compared with around 5 percent of those using a check- the roles it can play biologically, if you decrease TGF-β, point inhibitor alone. What’s more, the treatment shrank you may make it easier for immune cells to do their job.” tumors outside the radiation field, known as an abscopal Gulley’s team is studying an experimental drug, effect. She also showed that combining the CTLA-4 M7824, that combines a monoclonal antibody against checkpoint inhibitor Yervoy (ipilimumab) with cryoablation PD-L1 with a trap that vacuums up TGF-β. In a small (tumor freezing) attracted more T cells. study, 5 of 12 people with human papillomavirus–positive “We’re learning to use checkpoint inhibitors more cancers experienced tumor shrinkage. One woman with effectively,” says Nora Disis, MD, of the University of metastatic cervical cancer had a complete response that Washington and Fred Hutchinson Cancer Research Cen- has lasted two years so far. The drug may be even more ter. “Colder tumors may show a response if we use these effective when combined with checkpoint blockers. drugs up front, in the neoadjuvant setting, treating cancer Changing the gut microbiome, or ecosystem of intestinal before it’s had a chance to develop a lot of genetic altera- microbes, can also affect response to immunotherapy. tions that make it resistant to immune attack.”

Jennifer Wargo, MD, of MD Anderson Cancer Center, The I-SPY 2 trial found that women with advanced and her group found that people who respond well to

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been in remission for years (see “A Melanoma Diary,” page 14). The TIL therapy furthest along in commercial development could hit the market in 2019.

Under normal circumstances, TILs don’t eliminate cancer in most people.

In particular, they’re not very effective against cancers of the breast, prostate or digestive tract. But better target selection might improve responses.

Rosenberg’s group recently reported that carefully selected TILs led to complete regression of metastatic breast cancer in a woman who didn’t respond to prior treatments.

The researchers found more than 60 mutations CELL THERAPIES in the woman’s tumor that While checkpoint inhibi- Clockwise from top left: James Gulley, MD, PhD; were not present in normal tors boost immune activity, Stephen Rosenberg, MD, PhD; Carl June, MD; Jennifer Wargo, MD cells and identified four other therapies take a more TILs that recognized the direct approach, manipumutated proteins. These were multiplied and reinfused lating immune cells to make them work better.

Although adoptive cell transfer approaches have been along with the T-cell-stimulating cytokine interleukin-2 studied for decades, they have only recently become ready and Keytruda. The woman’s cancer disappeared comfor prime time. The trick is to get naturally occurring or pletely and has not returned two years later.

“It is ironic that the very mutations that cause the genetically engineered T cells—and potentially other types of immune cells—to recognize and attack cancer cancer may prove to be the best targets to treat the cancer,” Rosenberg says. without also harming healthy cells.

If checkpoint blockers work by taking the brakes off Steven Rosenberg, MD, PhD, chief of the Surgery Branch at the National Cancer Institute, pioneered the T cells, cancer vaccines are more like stepping on the use of tumor-infiltrating lymphocytes (TILs), white blood accelerator. Therapeutic cancer vaccines generally train cells collected from tumors that already know how to rec- the immune system to recognize antigens commonly found on tumors, but personalized vaccines can be designed ognize and attack the cancer.

In this procedure, immune cells are harvested from a to target an individual’s specific tumor neoantigens.

The only approved cancer vaccine, Provenge, is created removed tumor or biopsy sample. The cells with the strongest antitumor activity are selected, multiplied and from antigen-presenting dendritic cells. A patient’s cells are exposed in the lab to prostatic acid phosphatase and returned to the patient.

In clinical trials, TILs have worked well for melano- returned to the body to trigger a T-cell attack. An experima, with response rates exceeding 50 percent—though mental breast cancer vaccine takes a similar approach, durable response rates are lower. Some responders have helping T cells learn to recognize and attack HER2.

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(JUNE, GULLEY) LIZ HIGHLEYMAN; (WARGO) COURTESY OF MD ANDERSON CANCER CENTER; (ROSENBERG) COURTESY OF NATIONAL CANCER INSTITUTE

checkpoint blockers have different types and greater diversity of gut bacteria. If patients have a favorable gut microbiome, they have more favorable T cells in their tumors. What’s more, fecal microbiota transplants from human responders led to slower tumor growth in mice.

“Can profiling the gut microbiome of patients going on immunotherapy give us insight into the likelihood of response?

And can we change the microbiome to enhance responses?” Wargo asks.

“Gut biomarkers could be really useful in the era of precision medicine.”

“WE NEED PATIENTS TO HELP US BY ENROLLING IN CLINICAL TRIALS.”

These general vaccines are moderately effective, but personalized vaccines like NeoVax appear more promising.

In fact, there’s no clear line between individualized vaccines and an approach like Rosenberg’s that selects and strengthens T cells that recognize and attack specific cancer neoantigens.

Another adoptive cell transfer approach uses a harmless virus to insert genes into a patient’s T cells to make them express naturally occurring T-cell receptors (TCRs) that recognize cancer antigens.

A related method, chimeric antigen receptor T-cell therapy, or CAR-T, engineers T cells to express artificial receptors that are better at binding to cancer cells. The first child with leukemia treated with CAR-T therapy in a trial led by Carl June, MD, director of the Center for Cellular Immunotherapy at the University of Pennsylvania Abramson Cancer Center, has now been cancer-free for more than six years; the response rate for children with her type of cancer is around 80 percent.

One limitation of existing CAR-T therapies is that they recognize antigens only on the surface of cancer cells, so they work best against blood cancers rather than solid tumors. And cancer can become resistant to CAR-T cells that carry a single synthetic receptor.

Kymriah and Yescarta, the two approved CAR-T therapies, bind to the CD19 protein on B cells. Dubbed tanCARs, tandem therapies carrying two receptors make it twice as hard for cancer to evade treatment. Kristen Fousek, PhD, of Baylor College of Medicine, and colleagues have even developed a triCAR that targets CD19, CD20 and CD21, forcing leukemia to overcome a three-pronged attack in order to develop resistance.

Armored CARs and TRUCKs (T cells Redirected for Universal Cytokine Killing) release immune-boosting cytokines that help T cells penetrate tumors. One study showed that an interleukin-12-secreting armored CAR for ovarian cancer overcame a hostile microenvironment that would sap the strength of ordinary CAR-T cells.

Usually, viruses are used to modify cancer-fighting T cells, which can be a slow and expensive process. Alex Marson, MD, PhD, of UCSF, and colleagues recently reported that they used CRISPR gene-editing technology to achieve the same end. In a lab study, they showed that CRISPR-engineered T cells could recognize and respond to human melanoma tumors implanted in mice. “This has

the potential to make it much faster and less expensive to produce CAR-T and cell therapies,” Bluestone says.

Creating a customized living drug for each patient is labor-intensive and costly; ultimately, researchers hope to create off-the shelf therapies that don’t require modifying cells from individual patients but can instead be produced using T cells from healthy donors or newborn cord blood. The main barrier is that normal donor T cells recognize the recipient’s tissue as foreign and attack it, causing graft-versus-host disease. But gene editing to alter T-cell receptors can prevent this.

Although T cells are the usual raw material for engineered cancer fighters, researchers are also exploring natural killer (NK) cells. CAR-NK cells may not persist long-term like CAR-T cells, but they have the advantage of not attacking the recipient.

“While current immunotherapy strategies have focused almost exclusively on engaging CD8 cytotoxic T cells, better results will likely be achieved by bringing the entire immune team into play, as occurs during infections with viruses and bacteria,” Lanier predicts.

GO WITH COMBOS Most experts expect that future immunotherapy breakthroughs will require combination approaches.

“I think the most promising new thrust is the development of combination immunotherapies and targeted therapies—for example, CAR-T cells combined with checkpoint inhibitors or oncolytic viruses or NK cells,” June says. “The other main issue will be learning when immunotherapy can be used in frontline indications rather than being reserved for salvage strategies.”

But this means more clinical trials and the need for many more trial participants. Currently, only around 5 percent of people with cancer join these studies.

“We need patients to help us by enrolling in clinical trials,” says Disis. “The quicker we can finish these studies, the faster we can get new immunotherapies to become the standard of care.” ■

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YOUR TEAM

BY KURT ULLMAN

Know Your Genes

Nancie Petrucelli

BETWEEN 5 AND 10 PERCENT of cancers are hereditary, meaning they are passed on genetically from parents to children. Genetic testing looks for specific changes, or mutations, in a person’s genes that can increase their risk of developing certain cancers. Although only a small percentage of cancers have a known genetic cause, identifying individuals with these mutations—and their

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family members—can lead to early awareness, treatment and, in some cases, prevention.

What is a genetic counselor?

Cancer genetic counselors are a lot like detectives. Most cancers occur because of random changes in your body over your lifetime, but some are hereditary. People are referred to us when it’s suspected that cancer could be running

through the genes in a family.

Our role is to assess the family history to see whether genetic testing might be appropriate, educate a person about which tests are needed, discuss what their results mean and provide psychosocial support. If the test is positive, we give them information about what they need to do next and help coordinate their care going forward.

COURTESY OF KARMANOS CANCER INSTITUTE

Nancie Petrucelli is senior genetic counselor at the Karmanos Cancer Institute in Detroit.

How do you accomplish this?

We take a detailed family history on both the mom’s and the dad’s side going back three generations. This helps us assess the likelihood that a mutated gene is causing cancer in the family. Red flags include cancers developing at an earlier age than expected, the same or related types of cancer in multiple relatives, certain rare cancers or a family member with a known mutation.

We share the results of the history and whether criteria for genetic testing are met. If so, we suggest appropriate testing, discuss how each of the possible results would impact the patient and family members and determine what the next steps would be. If the person consents, blood is drawn and sent to the laboratory.

What happens next?

Depending on the results, we discuss what they mean to the patient and his or her family.

If positive, the talk is usually lengthier. We discuss cancer risks in detail, according to the mutations identified.

One important issue is the options available to reduce future risk. For most cancers, screening more frequently is recommended for early detection. But for some cancers that are considered hard to screen for or are more aggressive, surgery to remove the organ before malignancy develops could be a possibility.

Anxiety and depression are concerns for many people.

Counselors provide support and help patients cope during the genetic testing process. If long-term support is needed, we can link patients with mental health professionals.

One thing that sets genetic testing apart is that the results also have implications for the patient’s family. We help the patient communicate that information to relatives so they can also benefit.

These test results can also impact future generations. We discuss the chance of cancer

What about over-the-counter genetic testing?

The test that the Food and Drug Administration has approved analyzes only three of the thousands of variations in the BRCA1 and BRCA2 breast cancer susceptibility genes (see page 13). And these three variations are rarely seen outside of Ashkenazi Jewish communities. So the utility of this test is limited to a very small number of mutations within a very small and specific population group.

Genetic testing results also have implications for the patient’s family. susceptibility being passed on to children. For most inherited cancers, the probability of the mutation being present in offspring is 50 percent.

How does this genetic testing differ from testing genes in a tumor?

Unlike what I do, genetic testing of a tumor is done on someone who already has cancer. It looks at genetic mutations within the malignant cells to help determine the most effective treatment for that particular tumor in that particular person.

What do you find most inspiring or hopeful about your work?

With the significant cancer histories some families have, many people have thought it was a question of not if but when they would develop cancer. Using genetic testing, we can now determine not only who is at risk for hereditary cancer—and therefore who needs enhanced screening and management— but also who is not. We can offer these people reassurance that their risk is similar to the general population’s. Genetic testing allows people to be proactive about their own health. ■

cancerhealth.com

FALL 2018

CancerHealth 27

BY CAMERON GORMAN

Eating Well During Treatment CANCER TREATMENT CAN FEEL LIKE A WHIRLWIND AT times—you have to think about medication, doctor’s visits, which treatment options to pursue and more. Eating well is one of the most important ways you can take care of yourself during treatment. Good nutrition maintains your energy and strength, helps you to heal and supports your immune system when you need it most. Although there’s no solid evidence that eating certain foods can prevent cancer relapse, people who stick to a healthy diet have a lower overall risk of cancer.

Cancer treatment not only changes your nutritional needs, but some of its side effects can make meeting those needs more difficult. If you’re feeling nauseous, try eating small snacks throughout the day instead of a few big meals. If you experience lack of appetite or weight loss during treatment, try filling up on foods with more protein and other nutrients.

Sometimes it helps to add high-calorie extras such as cream, peanut butter or honey. On the other hand, if you’re gaining weight you don’t want, focus on nutritious low-fat, low-calorie foods and cut back on salt, which can cause swelling.

Fatigue can make it hard to shop and cook. Before a treatment session, stock up on groceries and foods that can be prepared in advance. Don’t be afraid to ask family and friends for help!

It’s important to communicate with your care team during treatment. If you’re having trouble eating, talk to your doctor or nurse to see whether your medications can be adjusted to alleviate symptoms that make it difficult to eat well. If you’re malnourished, it’s important to get medical help so you can receive the nutrients you need. Keeping your body well nourished is part of living a healthy life during and after treatment. ■

28 CancerHealth FALL 2018 cancerhealth.com

10 HEALTHY EATING TIPS 1

Try peppermint, ginger or medicinal cannabis to reduce nausea.

2

Avoid greasy and spicy foods and those with strong odors.

3

After eating, rest sitting up instead of lying down.

4

Replace lost fluids with clear liquids, such as broths and sports drinks.

5

To alleviate constipation, drink lots of fluids and eat more fiber.

6

Try nutrient-rich milkshakes and smoothies if you have mouth or throat pain.

7

Stock up on simple, nutritious snacks, like yogurt, nuts and granola bars.

8

Cook food in large batches and freeze into meal-sized portions.

9

Try using plastic instead of metal utensils if you’re bothered by changes in taste.

10

Get moderate exercise to stimulate your appetite.

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HOW TO

A breast cancer diagnosis is scary.

At Living Beyond Breast Cancer, your well-being is our number one concern.

We have information designed to help you better understand your breast cancer diagnosis. You’ll also find ways to connect to a supportive, understanding community online, in print, by phone and in person.

Living Beyond Breast Cancer is a national organization created by and for women. We provide trusted information and support every day.

Through programs and services, designed specifically for both early-stage and metastatic diagnoses, we provide insight and guidance based on science, driven by compassion and delivered by those who know what it means to hear the words: “You have breast cancer.”

If you need a place to turn, Living Beyond Breast Cancer is here to help.

LEARN MORE about early-stage and metastatic breast cancer at LBBC.ORG/i-am

CAN497854.pdf 08.21.2018 14:52

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GOOD STUFF

BY MEAVE GALLAGHER

HEAD TO TOE Our latest favorite products to help you look and feel your best

Made in consultation with breast cancer patients, Theya bras are gentle on sensitive post-surgery skin. The Peony

Front-Fastening Post-Surgery Bra With Medium Support (sizes XS to XL, $60) is

made of hypoallergenic bamboo and has no irritating seams, wires or tags.

The bra’s light pads can be replaced with prostheses.

Sephora offers a free “Brave

Beauty in the Face of Cancer”

course as part of its Classes for Confidence program. “Brave Beauty” is a 90-minute class for people whose appearance has been affected by cancer treatment. Participants receive personalized skin care tips and learn about techniques and products to enhance their complexion, brows and eyes. Register at sephorastands.com for an event at a participating store.

30 CancerHealth FALL 2018 cancerhealth.com

After seeing a friend experience chemotherapy with a peripherally inserted central catheter (PICC) line, Care+Wear founders Chaitenya Razdan and Susan Jones decided to create a better line cover than the tube sock their friend was using. Their Ultra-Soft Antimicrobial PICC Line Cover ($30, eight sizes) is available in a

rainbow of colors and features a mesh window for easy monitoring. Plus, it may be eligible for flexible spending and health savings accounts.

Marjorie Newman created Recovery Skin Relief after her skin suffered during radiation therapy for breast cancer.

Made for deep hydration,

Radiation Ultimate Soothing Cream (3.75 oz., $14.99) relieves

burning, itching skin with ingredients including mineral oil, silicone oil and salicylic acid.

(SEPHORA STANDS) COURTESY OF SEPHORA

In FLAT: Reclaiming My Body From Breast Cancer (Skyhorse, $24.99), journalist Catherine Guthrie recounts her two bouts with the disease and her treatments, including a double mastectomy.

(See excerpt, page 9.) After 20 years of covering women’s health, Guthrie thought she understood breast cancer, but after her first diagnosis, “I realized I knew nothing.” FLAT is about “finding the strength to forge an unconventional path—one of listening to my body.”

BY MEAVE GALLAGHER

RESOURCES

Breast Cancer Support Groups WHETHER IN PERSON, ONLINE OR OVER THE PHONE, talking with other people who’ve shared your experience with breast cancer can make all the difference in the world.

BEYOND THE PINK MOON facebook.com/groups/ BeyondthePinkMoon A private Facebook group for people affected by breast cancer and ovarian cancer, Beyond the Pink Moon has over 7,000 members worldwide.

CANCERCARE cancercare.org CancerCare has online support groups for people with metastatic and triple-negative breast cancer. It also offers a 12-week phone support group for men with breast cancer.

BEYOND THE SHOCK beyondtheshock.com Created by the National Breast Cancer Foundation, Beyond the Shock has an online forum and an iPhone app.

LIVING BEYOND BREAST CANCER lbbc.org A radiation oncologist founded LBBC in 1991. It offers in-person, online and phone programs and services for people affected by breast cancer and hosts an annual conference.

ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

BREAST CANCER ACTION bcaction.org BCAction’s Information & Resource Service helps people understand their breast cancer diagnosis, treatment options and the latest scientific studies.

BREASTCANCER.ORG community.breastcancer.org People affected by breast cancer can support, encourage and commiserate with one another in the online community and discussion boards.

CANCER SUPPORT COMMUNITY cancersupportcommunity.org CSC offers in-person support groups, educational sessions, health and wellness programs, and a private social media platform.

METASTATIC BREAST CANCER NETWORK mbcn.org MBCN, founded in 2004 by two women with advanced breast cancer, maintains a membercreated database of in-person support across the United States and Canada for people with Stage IV breast cancer.

REACH TO RECOVERY cancer.org/treatment/supportprograms-and-services/reachto-recovery.html RTR matches people with breast cancer—from the newly diagnosed to those in remission— with trained volunteers to give information and support on the phone or in person.

SHARE CANCER SUPPORT sharecancersupport.org People affected by breast and ovarian cancer can talk with a survivor or a caregiver on one of SHARE’s help lines—for breast cancer, ovarian cancer, caregivers and Spanish speakers—or join a telephone support group.

SUPPORT CONNECTION supportconnection.org Those living with breast or ovarian cancer can be matched with a trained cancer survivor counselor for emotional, social and educational support by phone. Phone and in-person support groups are available too.

TRIPLE NEGATIVE BREAST CANCER FOUNDATION tnbcfoundation.org Speak with a trained social worker on the help line and find out about local counseling and support groups. TNBC also has an online forum.

YOUNG SURVIVAL COALITION youngsurvival.org YSC’s Face 2 Face networks provide in-person connection for young women with breast cancer. YSC also offers peer-topeer telephone counseling and hosts online discussion boards, video support groups and a private Facebook group.

cancerhealth.com

FALL 2018

CancerHealth 31

LIFE WITH CANCER

BY KEN BROWN

Go Live Your Dream EVERYONE HAS A STORY TO tell. Mine begins in Tanzania in December 2011. I was 62 years old and returning to the airport after a safari in the Serengeti.

Our guide stopped the bus and asked us to look at the horizon, where we took in the magnificent sight of the sun shining on Mount Kilimanjaro. I vowed that I would one day come back to hike Mount Kili.

In September 2013, I was diagnosed with pancreatic cancer, and my focus turned to survival rather than climbing a

mountain. It is the third most deadly cancer and the only one with a five-year survival rate in the single digits.

But I was fortunate. My tumor was discovered early, I had amazing doctors and I responded well to treatment. In January 2014, I had the Whipple procedure, a complex surgery to remove my tumor, performed by Malcolm Bilimoria, MD, of Northwest Community Healthcare near Chicago. My chemotherapy ended in June 2014, and I now receive periodic CT scans to monitor my status.

During a follow-up scan in 2017, Dr. Bilimoria mentioned that he and some friends were going to hike Kilimanjaro in the fall. I told him that that was my dream but because of my age, cancer and heart issues, the dream had ended.

I mentioned Dr. Bilimoria’s trip to my family. They reminded me that “life is about the journey” and encouraged me to at least attempt to fulfill my dream with the surgeon who helped save my life.

Ken Brown (right) and Malcolm Bilimoria, MD

32 CancerHealth FALL 2018 cancerhealth.com

I spent the next four months training. The hike takes eight days and reaches an elevation of 19,300 feet. The major problem is adjusting to the altitude. At times, the training seemed overwhelming and I questioned my decision to attempt the climb. But the goal of pursuing a dream I had thought was no longer possible after my cancer diagnosis kept me motivated every day.

When I landed at the Kilimanjaro airport last September, I knew I had made the right decision. As I walked out onto the tarmac, tears started streaming down my cheeks.

Despite cancer, I was fulfilling a goal I had set for myself years ago. The dream had finally become a reality.

It didn’t matter whether I made it to the top, and, in fact, I did not. On the sixth day, a heart issue required me to turn back.

But it was still one of the greatest experiences of my life.

At my last scan, Dr. Bilimoria had a special gift for me: a plaque with a drawing of Kilimanjaro and the phrase “Go Live Your Dream.” I refused to let my cancer defeat me or limit what I could accomplish. A cancer diagnosis does not have to put an end to your ability to achieve your goals. I encourage everyone to go live their dreams. ■

COURTESY OF KEN BROWN

Ken Brown, a pancreatic cancer survivor for five years, hiked the world’s tallest freestanding mountain with his cancer surgeon.

SURVEY

YOUR CANCER TREATMENT

5

What were your side effects like? ❑ Mild ❑ Moderate ❑ Severe

6

Have you had to stop treatment because of side effects? ❑ Yes ❑ No

It is estimated that more than one in three people in the United States will be diagnosed with cancer during their lifetime. At a time when cancer therapy is evolving rapidly, Cancer Health wants to know about your experiences with treatment.

7

What steps have you taken to reduce or relieve side effects? ❑ Acupuncture ❑ Anti-nausea or anti-diarrhea medication ❑ Exercise or physical therapy ❑ Mental health counseling ❑ Medical cannabis ❑ Pain medication ❑ Scalp cooling to reduce hair loss ❑ Treatment for anemia or neutropenia

8

What year were you born? __ __ __ __

9

What is your gender? ❑ Male ❑ Female ❑ Transgender ❑ Other

1

If you have been diagnosed with cancer, what type was it? ______________________

2

Where are you in the treatment process? ❑ I have not yet started treatment. ❑ I am currently receiving treatment. ❑ I have finished treatment and have no evidence of cancer. ❑ I finished treatment, but the cancer is still present or has come back. ❑ I will not receive further treatment beyond palliative care.

3

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4

What types of treatment have you received?

(Check all that apply.) ❑ Surgery ❑ Radiation therapy ❑ Targeted therapy ❑ CAR-T therapy ❑ Traditional chemotherapy ❑ Hormone or endocrine therapy ❑ Immune checkpoint inhibitors ❑ Other (please specify): ________________ What treatment side effects have you experienced? (Check all that apply.) ❑ Anemia ❑ Cognitive changes ❑ Constipation ❑ Diarrhea ❑ Fatigue ❑ Fever ❑ Hair loss ❑ Immune reactions ❑ Infections ❑ Loss of appetite ❑ Nausea/vomiting ❑ Neuropathy ❑ Pain ❑ Skin problems Sleep problems ❑ ❑ Other (please specify): ________________

10 What is your level of education? ❑ Some high school ❑ High school graduate ❑ Some college ❑ Bachelor’s degree ❑ Graduate or professional degree 11 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 12 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 13 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 #3, 212 West 35th Street, 8th Floor, New York, NY 10001

Support the brilliant and bold young scientists who are leading our efforts to prevent or cure all forms of cancer.

100% of donations go to cancer research

Learn more at www.damonrunyon.org CAN497853.pdf 08.21.2018 14:52

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