Cancer Health Spring 2020

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

CAR-T MIRACLE The story of a pioneering patient

Changing Your Doctor to Save Your Life?

These Vaccines Fight Tumors Ask the Right Questions

A Breast Cancer Diary Benefits of Early Palliative Care Test Your Knowledge: Take the Quiz!

Finding a Clinical Trial

Healing Retreats: A Resource Guide

Denise Delatorre

FINANCIAL FREEDOM at Your Fingertips Our Program

Our #1 nationally-ranked program helps hundreds of patients receive immediate cash through the sale of their life policy.

A Better Life

Our program gives you cash for your policy, letting you gain access to life-saving treatments, a higher quality of life, peace of mind, and so much more.

We Are Here For You

If you’ve been diagnosed with cancer and have a life policy of $100,000 or more, get your free, no-obligation estimate today.

INSTANT QUOTE!

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

CAN520950.pdf 02.20.2020 08:47

ESA

CONTENTS

E xclusively on

Denise Delatorre: “I’m living in a new world of hope.”

Cancer Health.com Cancer Health Stories Read the firstperson stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories

Basics

Whether you’re newly diagnosed or a long-term survivor, check out our fact sheets on cancer treatment, managing side effects and more. cancerhealth.com/basics

Treatment News

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

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

Blogs

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

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

14 PIONEERING PATIENT Denise Delatorre was given six months to live. Then she got a chance to enter an early trial for CAR-T therapy. BY ABBY SAJID 20 THE NEW PALLIATIVE CARE Get help early for a better quality of life. BY BOB BARNETT 24 A SHOT AT A CURE A new kind of vaccine fights cancer. BY LIZ HIGHLEYMAN

3 From the Editor A wily foe 4 Care & Treatment CAR-T for more cancers | chemotherapy payloads | one-second radiation | breast cancer in the brain | treating hep B and C 6 News Ask the right questions | good news on cancer mortality | websites worth watching | Council of Dads | psychedelic therapy 8 Basics Vaccines to prevent cancer 11 Voices “Disobedience,” an excerpt from Anne Boyer’s The Undying

12 Diary Sheila McGlown left the Air Force, but now she’s fighting for women with metastatic breast cancer.

28 Your Team What a clinical trial navigator does 29 Resources Healing retreats for body and soul 30 Good Stuff Products to ease aches, protect skin and grow good-for-you greens 32 Life With Cancer A handy primer to educate your friends and family with humor 33 Quiz How much do you really know?

cancerhealth.com

SPRING 2020

CancerHealth 1

FIND US AT

CancerHealth.com TM

• A daily resource for people living with and affected by cancer • Clear, comprehensive prevention and treatment information • News, personal stories, blogs, community forums and more • Sign up online to receive free treatment and lifestyle email newsletters Follow us on:

A SMART + STRONG PUBLICATION Award-winning consumer health care information

CancerHealth_House_Ad_2020_HY.indd 25

2/11/20 11:59 AM RHL18511-00_HouseAd.pgs 02.11.2020 12:01

FROM THE EDITOR

Cancer Health TM

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

(HIGHLEYMAN) WINNI WINTERMEYER; (ILLUSTRATION) ISTOCK

SMART + STRONG PRESIDENT AND COO Ian E. Anderson EDITORIAL DIRECTOR Oriol R. Gutierrez Jr. EXECUTIVE EDITOR Bob Barnett CHIEF TECHNOLOGY OFFICER Christian Evans VICE PRESIDENT, INTEGRATED SALES Diane Anderson INTEGRATED ADVERTISING MANAGER Jonathan Gaskell INTEGRATED ADVERTISING COORDINATOR Ivy Peterson SALES OFFICE 212-938-2051 sales@cancerhealth.com BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com CDM PUBLISHING, LLC CHIEF EXECUTIVE OFFICER Jeremy Grayzel CONTROLLER Joel Kaplan Cancer Health (ISSN 2688-6200) Issue No. 9. Copyright © 2020 CDM Publishing, LLC. All rights reserved.

No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher. Smart + Strong® and Cancer Health™ are registered trademarks of CDM Publishing, LLC. Cancer Health is BPA audited.

A Wily Foe WE’RE LIVING IN A REMARKABLE era of advances in cancer treatment.

Results from clinical trials of new therapies are reported in medical journals every day. There’s so much to learn that even people who focus on the field full-time have trouble keeping up!

That’s why we’ve devoted this issue to the theme of treatment.

Many of the new studies are promising, but experimental therapies fail more often than they succeed.

Cancer is a wily foe that has found many ways to survive, hiding from the immune system and turning off the body’s natural defenses.

But researchers are making progress.

Here at Cancer Health, we strive to help you make sense of the avalanche of new information, both by reporting the latest research findings and sharing stories of people’s experiences using novel treatments. We’re fortunate to work with organizations such as the Damon Runyon Cancer Research Foundation to give us insights into promising research.

Our feature on page 14 profiles Denise Delatorre, a woman with non–Hodgkin lymphoma who became one of the first patients to try CAR-T therapy, a remarkable “living drug” that reprograms an individual’s own T cells to fight cancer. Another promising approach is therapeutic cancer vaccines, which aim to halt the progression of existing cancer, prevent relapse and maybe even offer a cure (see page 24).

But treatment is not just about the latest high-tech approaches. Improving quality of life matters as much as prolonging survival. The feature on

page 20 describes how palliative care can help improve people’s lives at all stages of cancer.

Learning about new treatments and discussing them with your care team is an important part of self-advocacy.

“Disobedience” (page 11), an excerpt from Anne Boyer’s book The Undying, chronicles her difficult choice to change oncologists.

Whether you are newly diagnosed, currently undergoing treatment or a long-term survivor, we hope you’ll consider Cancer Health part of your advocacy team. It’s been great to work on this treatment issue with editor-in-chief Bob Barnett, who’ll be back on this page in the summer issue.

LIZ HIGHLEYMAN Science Editor lizh@cancerhealth.com Twitter: @LizCancerHealth

cancerhealth.com

SPRING 2020 CancerHealth 3

CARE & TREATMENT

BY LIZ HIGHLEYMAN

CAR-T for More Cancers Chimeric antigen receptor T-cell therapy, better known as CAR-T, reprograms patients’ T cells to attack their cancer. The first two CAR-Ts were approved in 2017 to treat children with acute lymphoblastic leukemia and adults with large B-cell lymphoma (see “Pioneering Patient,” page 14).

But the customized immunotherapy holds promise for more types of blood cancer, researchers reported at the American Society of Hematology Annual Meeting in December.

The experimental CAR-T liso-cel led to cancer regression in 82% of study participants with previously treated chronic lymphocytic leukemia in a Phase I/II trial. Liso-cel also shows promise for large B-cell lymphoma and appears safe for people treated as outpatients, suggesting it may not have to be administered in a hospital.

In the Phase II ZUMA-2 study of KTE-X19, a CAR-T candidate for mantle cell lymphoma, 93% of patients saw their tumors shrink, including 67% with complete responses. Kite, a Gilead company, has submitted an application for Food and Drug Administration approval.

Finally, two dual-target CAR-Ts produced good

response rates in people with relapsed or nonresponsive multiple myeloma.

JNJ-4528 uses two synthetic receptors to target the BCMA antigen on myeloma cells. In the Phase I/II CARTITUDE-1 study, all of the first 29 participants experienced cancer regession, yielding an overall response rate of 100%. A CAR-T dubbed BM38, which targets both BCMA and the CD38 receptor on myeloma cells, had a response rate of 90%.

“To see some patients in this heavily pretreated population surviving for a year or more with a onetime treatment and a manageable safety profile is remarkable,” said CARTITUDE-1 lead investigator Deepu Madduri, MD, of the Tisch Cancer Institute at Mount Sinai in New York City. “These patients feel that they have their quality of life back.”

SPECIAL DELIVERY Traditional chemotherapy indiscriminately kills cancer cells and healthy cells alike, which leads to side effects. But what if antibodies could deliver a chemo payload directly to tumors, thereby sparing normal cells?

That’s the idea behind antibody-drug conjugates (ADCs), which use monoclonal antibodies to carry lethal drugs to tumors.

“These conjugates combine the ability of monoclonal antibodies to target specific receptors on cancer cells and then deliver a drug to the cancer cell,” says

4 CancerHealth SPRING 2020 cancerhealth.com

Richard Pazdur, MD, director of the Food and Drug Administration (FDA) Oncology Center of Excellence.

The FDA approved three new ADCs last year. Polivy (polatuzumab vedotin) targets cancerous B cells in people with lymphoma. Padcev (enfortumab vedotin) targets nectin-4, a protein found on bladder cancer cells. The newest ADC, Enhertu (fam-trastuzumab deruxtecan), joins Kadcyla (ado-trastuzumab emtansine) as an option for people with HER2-positive

breast cancer. A study presented at the San Antonio Breast Cancer Symposium showed that 61% of women treated with Enhertu had complete or partial tumor shrinkage.

OneSecond Radiation?

ALL IMAGES: ISTOCK

The days of people with cancer undergoing weeks of radiation therapy could be over if early findings about a new method for delivering radiation in less than one second are confirmed.

Researchers from the Abramson Cancer Center at the University of Pennsylvania reported preliminary success using FLASH radiotherapy, which employs proton technology to deliver a rapid, intense and more targeted dose of radiation than traditional electron radiation.

In experiments on pancreatic tumors from mice, FLASH had the same therapeutic effect as traditional radiation therapy, but the vastly reduced treatment time proved less harmful to healthy cells.

Breast Cancer in the Brain Tucatinib, a new targeted therapy, delays disease progression and improves survival in people with previously treated HER2-positive metastatic breast cancer, including those whose cancer has spread to the brain, researchers reported at the San Antonio Breast Cancer Symposium in December.

The Phase II HER2CLIMB study tested the experimental kinase inhibitor in 612 participants. Nearly half had brain metastasis—a group often excluded from clinical trials.

After a year, the risk of disease progression or death was 46% lower for participants randomly assigned to tucatinib plus Herceptin (trastuzumab) and chemotherapy compared with those who received

a placebo regimen.

Among patients with brain metastasis, everyone in the placebo group worsened, but a quarter of those in the tucatinib group saw no disease progression.

Overall survival at one year was 76% in the tucatinib group versus 62% in the placebo group; at two years, the corresponding figures were 45% and 27%.

“These results are unprecedented for late-line therapy in advanced breast cancer and are a major advance for patients who have significant unmet medical need,” says the study’s lead investigator, Rashmi Murthy, MD, of the University of Texas MD Anderson Cancer Center.

HEP B AND C TREATMENT Over years or decades, chronic hepatitis B or C can lead to liver cirrhosis and hepatocellular carcinoma (HCC), the most common type of liver cancer. But treating these viruses can reduce the risk, researchers reported at The Liver Meeting in November.

In two Phase III studies comparing Viread (tenofovir disoproxil fumarate) versus Vemlidy (tenofovir alafenamide) for hepatitis B, both medications stopped viral replication. Over three to five years, 1.0% of Vemlidy recipients and 1.9% of Viread recipients developed HCC—58% less than expected in untreated people. Another analysis of French hep B patients found that people who took Baraclude (entecavir) had about the same low liver cancer risk as those who used Viread.

Hepatitis C can now be cured with direct-acting antiviral (DAA) therapy taken for eight to 12 weeks. Another study showed that people with liver cancer who were cured of hep C have a lower risk of both liver-related and all-cause death. Five-year survival rates were 88% in the cured group versus 66% in the untreated group.

Even people with advanced HCC had a high hep C cure rate and saw a survival benefit.

For more care and treatment news: cancerhealth.com/treatment

NEWS

BY BOB BARNETT

ASKING THE RIGHT QUESTIONS Vinayak K. Prasad, MD, MPH, a hematologist-oncologist and author of Malignant: How Bad Policy and Bad Evidence Harm People with Cancer (see page 30), offers practical advice to anyone diagnosed with cancer: Don’t ask for a single prognosis percentage. “I always recommend asking for ranges, rather than absolute numbers,” such as the 25th and 75th percentiles, he writes. “Knowing this range allows you to hope for the best while preparing for the worst.”

Find out the purpose of your treatment. “In early visits, find out if the goal of treatment is to

get rid of the cancer forever or merely slow its growth. It’s fine to ask, ‘What happens if I do nothing?’’’

Save scans. “All information in the patient chart belongs to you.

If you see a different physician, take these reports with you, but make sure you get them back before you leave.”

Consider a second opinion.

“It is never wrong to get a second opinion, but the best moments would be prior to starting the proposed treatment at diagnosis and at major treatment junctions, such as if the cancer progresses.”

If there is no chance of cure, ask this. “If the treatment can’t be expected to cure your cancer, ask, ‘Is the potential upside of this drug or therapy worth the downsides?’ Keep a log of your symptoms…the choice is always yours.”

If treatment is curative, ask this. “If you get good news and your doctor recommends no further scans, ask about the long-term health risks from the treatment. Is there something you can do to mitigate that risk?”

29%

THE DECLINE IN CANCER MORTALITY BETWEEN 1991 AND 2017, ACCORDING to the latest report from the American Cancer Society. The 2.2% decrease from 2016 to 2017 was the largest single-year drop ever and has increased overall U.S. life expectancy. Reasons include fewer deaths from lung cancer (thanks largely to a decline in smoking) and from melanoma (mostly due to checkpoint inhibitor immunotherapy).

Websites Worth Watching Cook for Your Life (cookforyourlife.org). Founded in 2007 by two-time cancer survivor Ann Ogden Gaffney and run by the Fred Hutchinson Cancer Research Center in Seattle, the site features recipes, menu collections, articles and cooking videos.

Family Reach (familyreach.org). This nonprofit helps individuals and families defend against cancer-related financial toxicity by working with oncology social workers at major cancer centers, providing education, free financial planning and direct grants to individuals.

Leukemia & Lymphoma Society (lls.org). If you’re interested in finding a clinical trial for CAR-T therapy (see “Pioneering Patient,” page 14) or other treatments for blood cancers, including leukemia, lymphoma and multiple myeloma, the LLS provides free one-on-one consultations with a clinical trial nurse navigator. Call 800-955-4572, Monday through Friday, 9 a.m to 9 p.m.

6 CancerHealth SPRING 2020 cancerhealth.com

QUIZ ANSWERS Here are the answers to the Cancer Health Quiz on page 33.

1: C. The first pancancer drug, Vitrakvi (larotrectinib), was approved in November 2018.

Learn more at cancerhealth.com/ pancancer.

Council of Dads

(RICHARDS, STANDEN AND O’NEILL); COURTESY OF NBC/SETH F. JOHNSON; ALL OTHER IMAGES: ISTOCK

Imagine you’re an active, healthy guy who makes a Actors J.August Richards, Clive living walking around the world and writing about Standen and it. You and your wife have identical twin 3-year-old Michael O’Neill girls. Then you get a rare aggressive bone cancer.

You might not live. So you concoct a crazy idea and ask six friends to be everything for your daughters that you won’t be around to be. That’s the concept behind Bruce Feiler’s best-selling 2010 memoir, The Council of Dads.

Spoiler alert: Bruce lives. His book, just reissued, describes his extraordinary struggle back to health and hiking. But Scott Perry, the character based on Feiler in the new NBC miniseries Council of Dads, which premiered March 10, wasn’t so lucky. After Perry’s death, this Council of Dads helps his wife raise five kids.

“I have an old motto from my years fighting this disease—‘Have a cancer conversation every day,’” says Feiler. “Those of us who have been fortunate to get through an ordeal of this nature have the opportunity and obligation to pass along anything we’ve learned that may, in some way, help others. I have been fortunate to get to play that role for almost a dozen years now.”

Get more cancer news: cancerhealth.com/news

3: C. The human papillomavirus (HPV) and hepatitis B vaccines can prevent certain cancers, but new experimental cancer vaccines fight tumors. See “A Shot at a Cure,” page 24.

4: F. CAR-T therapies are approved for acute lymphoblastic leukemia in children and large B-cell lymphoma in adults. See “Pioneering Patient,” page 14.

5: E. Palliative care is often confused with hospice care, but it is for anyone who faces distressing symptoms at any stage of cancer. See “The New Palliative Care,” page 20.

6: C. In October 2019, Mathew Knowles revealed he has breast cancer. Learn more at cancer health.com/malebreastcancer.

7: B. People with melanoma respond better if they don’t take probiotics. Learn more at cancerhealth.com/microbiome.

PSYCHEDELIC THERAPY For people with cancer, a single dose of the magic mushroom–derived drug psilocybin, combined with nine psychotherapy sessions, led to reductions in anxiety and depression that have lasted nearly five years, a study published in the Journal of Psychopharmacology has found.

According to lead investigator Gabby Agin-Liebes, a PhD

2: B. Aretha Franklin died of a pancreatic neuroendocrine tumor in August 2018. Learn more at cancerhealth.com/aretha.

candidate at Palo Alto University in California, the drug facilitates a deep, lasting, meaningful experience that can fundamentally change a person’s mindset and outlook.

However, she cautioned, psilocybin should be taken only in a controlled, psychologically safe setting, preferably with counseling from trained mental health practitioners.

8: B. Xerostomia means dry mouth. Learn nutrition strategies at cancerhealth.com/drymouth.

9: E. PARP inhibitors, HER2 inhibitors and CDK4/6 inhibitors treat advanced breast cancer.

Learn more at cancerhealth .com/targeted.

10: D. More than 16.9 million Americans have a history of cancer, according to the American Cancer Society. Learn more at cancerhealth.com/survivors.

cancerhealth.com

SPRING 2020

CancerHealth 7

BASICS

BY LIZ HIGHLEYMAN

Vaccines to Prevent Cancer

Available vaccines offer protection against cervical, anal, oral, liver and stomach cancers.

HUMAN PAPILLOMAVIRUS Human papillomavirus (HPV) causes cervical, anal, oral and other cancers. Most people acquire this common sexually transmitted infection soon after they become sexually active.

The Gardasil 9 vaccine protects against nine types of HPV that cause cancer or anal-genital warts. HPV vaccines are safe and effective, reducing infection rates and preventing precancerous cell changes.

The Centers for Disease Control and Prevention (CDC) recommends HPV vaccination for boys and girls at age 11 or 12, with catch-up vaccines for those up to age 26. Although the vaccine doesn’t work as well for older people, those ages 27 to 45 can talk with their health care provider about whether vaccination makes sense for them.

HEPATITIS B Over years or decades, chronic hepatitis B virus (HBV) infection can lead to complications that include liver cirrhosis and hepatocellular carcinoma, the most common type of liver cancer.

The HBV vaccine is part of the

8 CancerHealth SPRING 2020 cancerhealth.com

routine immunization schedule for infants, with the first dose given soon after birth.

The CDC also recommends the vaccine for adults at risk for the blood-borne virus. These include people with more than one sex partner, gay and bisexual men, people who inject drugs, health and public safety workers, certain travelers and people with chronic liver disease, HIV, kidney disease or diabetes—as well as anyone else who wants to be protected.

HEPATITIS C Like HBV, hepatitis C virus (HCV) also causes cirrhosis and liver cancer, and it may trigger non– Hodgkin lymphoma.

HCV does not confer natural immunity like HBV does, meaning people can acquire the virus more than once. This makes it difficult to develop an effective vaccine. However, a recent study showed that while an experimental hepatitis C vaccine failed to prevent chronic infection, those who were vaccinated and then contracted HCV had a lower viral load, showing that it stimulated immune activity.

The good news is that directacting antiviral medications can now cure hepatitis C in almost everyone with just eight to 12 weeks of well-tolerated oral treatment.

EPSTEIN-BARR VIRUS Epstein-Barr virus (EBV), part of the herpesvirus family, is linked to stomach cancer, nasopharyngeal cancer (affecting the upper part of the throat) and some types of lymphoma.

There is currently no vaccine for EBV, but researchers are making progress. Recent studies in mice and monkeys showed that experimental vaccines elicited potent antibody responses that prevented the virus from entering cells.

HELICOBACTER PYLORI Helicobacter pylori are bacteria that cause stomach ulcers and gastric cancer. A vaccine is not yet available, but research is underway, especially in Asia, where stomach cancer is common. Early-stage clinical trials suggest that vaccinating children may be a feasible way to prevent this infection. ■ Learn more cancer basics: cancerhealth.com/basics

ISTOCK

RESEARCHERS ARE WORKING overtime to develop therapeutic vaccines to treat cancer (see “A Shot at a Cure,” page 24).

In the meantime, preventive vaccines are a surefire way to protect against certain malignancies.

BY ANNE BOYER

VOICES

Disobedience

(BOYER) COURTESY OF ANNE BOYER/CASSANDRA GILLIG; BOOK COVER: COURTESY OF FARRAR, STRAUS AND GIROUX

Anne Boyer, a poet and essayist who lives in Kansas City, Missouri, writes about her experience with triple-negative breast cancer in The Undying.

IN THE CANCER PAVILION, disobedience is dangerous, but so is going along.

I begin to think that I have to leave my first oncologist—the one we call Dr. Baby—because, despite its being the standard of care, the treatment he is giving me doesn’t seem to work.

I bring in studies, I bring in friends, I bring in arguments, I lose sleep. He is good at his job.

He makes phone calls, he casts doubt on studies, he brings his best arguments, he tries to persuade my friends.

I feel like I am fighting for my life against a putto—a decorative Renaissance cherub. My friends don’t know who to believe about this question of my treatment: me, the chemo-damaged dérangée spending drug-hazed nights on PubMed, or Dr. Baby, a bald middle-aged man who wears slip-on clogs.

I like Dr. Baby, of course, and am certain that Dr. Baby cares about me, but not enough to be brave in the way I need him to be. Dr. Baby is making the decisions he believes are best for me, saying that a more aggressive treatment holds too great a risk for a younger patient because of its debilitating future effects. I tell him that to not offer the most aggressive treatment is too great a risk for a young patient because the survival numbers for the standard-of-care For more first-person stories: cancerhealth.com/stories

treatment are not acceptable.

I do not want to die, I tell him. I still have a lot left to do.

It is precisely because I still need time, I plead, that I will do anything to live.

My friend Cara has my back.

She narrows her eyes and asks him: “What’s the worst that can happen?” Dr. Baby, after listing the disabling long-term side effects, says to Cara, “She could die.”

Then he says, distraught enough that we believe him, “I’ve seen people die of chemotherapy.” Oncologists, too, fear oncology.

I go to another oncologist for a second opinion. She is a specialist in my cancer. It has been suggested to me that the regimen she prescribes for her patients, in furtherance of her research, is unusually aggressive and controversial. I don’t care because I want to live. The new oncologist says, upon hearing the facts of my triple negative’s specific subtype, that I am correct, that I have read the studies correctly, that the treatment I am asking for is indeed the one she believes will work.

I become her patient.

She is correct and I am correct, but Dr. Baby is also correct.

The new treatment is disabling, not just during, but for years

Award-winning author Anne Boyer on the steps of her home

after. Even by the extreme standards of chemotherapy, it feels like too much.

This new oncologist can barely remember my name, has none of Dr. Baby’s befuddled charm or intensity of feeling. But within days of the first infusion of the drug combination I was sure I needed, the tumor, which had been a nagging, terrifying, unshrinking pain in my breast for the duration of chemotherapy, finally ceases to hurt. ■ Excerpted from The Undying, by Anne Boyer. Published by Farrar, Straus and Giroux. Copyright © 2019

by Anne Boyer. All rights reserved.

cancerhealth.com

SPRING 2020

CancerHealth 11

DIARY

AS TOLD TO CATHERINE GUTHRIE

A Breast Cancer Diary

Former Air Force senior master sergeant Sheila McGlown, 53, has metastatic breast cancer. She lives with her husband near St. Louis.

February 2010 Because my cancer was estrogen positive, I had an oophorectomy [surgical removal of the ovaries].

I was thrust into menopause overnight. The hot flashes were the worst. I’d be sitting in a chair, and suddenly, sweat would start running down my face! I also started an aromatase inhibitor to wipe out my body’s remaining estrogen.

August 2010 I finished nine months of intravenous chemotherapy and transitioned onto an oral hormone therapy.

That was a lonely time. I had friends, but I didn’t know any other women—and certainly no AfricanAmerican women—with breast cancer. I learned upsetting news about my mother, who passed away in 2004 from what I’d believed was lung cancer. She actually died of breast cancer that had spread to her lungs.

November 2010 I found out I was getting a medical discharge as a senior master sergeant in the U.S. Air Force, a career I’d loved for 25 years. After I hung up the phone, I cried like a baby. Through the military, I

12 CancerHealth SPRING 2020 cancerhealth.com

built an amazing life for me and my daughter. I was sad because I hadn’t retired on my own terms. But then I thought, Maybe God has different plans for me.

March 2011 I chose to have a mastectomy, even though I didn’t need one. My doctors resisted at first, but I felt strongly about it, and, eventually, they said yes. I had a mastectomy on my right side and a breast reduction on my left side and, 18 months later, reconstructive surgery. Now both sides match, and I couldn’t be happier.

September 2012 I joined my first support group, the Young Women’s Breast Cancer Program at Siteman Cancer Center.

What a relief to finally talk to other breast cancer patients! And I connected with African-American breast cancer patients through two national support groups, Living Beyond Breast Cancer (LBBC) and Young Survival Coalition (YSC). That’s when I found my second calling—to educate Black women about breast cancer and advocate on a national level about racial disparities in breast cancer care.

My passion is fueled by the fact that African-American women diagnosed with breast cancer are more likely to die from it.

February 2013 I attended my first national breast cancer conference, in Seattle. Then, after three years of disease stability, a scan showed my cancer was on the move. For the next six months, my oncologist and I tried different combinations of chemotherapy drugs, looking for a protocol that halted cancer

BOTH IMAGES; COURTESY OF SHEILA MCGLOWN/ MODERN LUX PHOTOGRAPHY

December 2009 I started to get a burning sensation in my chest when I sneezed. I knew something wasn’t right, so I went to my doctor. I’d been doing breast selfexams for years, and neither my doctor nor I felt a lump. But a mammogram showed that I had Stage IV HER2-positive, estrogen receptor–positive breast cancer. It had spread to my liver and bones.

The burning sensation was caused by a cancerous lesion on one of my ribs. I told my oncologist, “Hit me with everything you’ve got” and started chemotherapy immediately.

BREAST CANCER 101 Breast cancer ranges from Stage I to Stage IV, which is metastatic cancer that has spread elsewhere in the body.

The brain, bones and liver are common sites of breast cancer metastases, also known as mets.

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

Targeted therapies, including PARP inhibitors and CDK4/6 inhibitors for metastatic breast cancer, work against cancer with specific characteristics.

For Sheila McGlown, giving up her 25-year career in the U.S. Air Force was the hardest part.

Most breast cancer tumors carry hormone receptors.

Estrogen stimulates breast cancer growth; treatment often includes hormone-blocking medications, and sometimes oophorectomy (ovary removal). The 20% of breast cancers that carry HER2 receptors can be treated with HER2-blocking drugs. Triple-negative breast cancer doesn’t express any of these receptors and is harder to treat.

growth without causing too many side effects.

In August, we landed on a great combination.

June 2016 That drug pairing worked perfectly for nearly three years. In early summer, though, another scan showed my cancer was becoming active again, so my oncologist added a third drug to my regimen.

Sometimes I feel nauseous, but it doesn’t last.

July 2016 I got married the day before my 50th birthday!

People always say, “Metastatic breast cancer patients can’t find love,” and I’m here to show them it can be done. My husband is a wonderful man who loves me no matter what.

July 2018 Things had been stable for a couple of years when one of my lesions—the one on my rib cage—began to grow. I started on a new clinical trial for a promising new breast cancer drug for women with HER2positive metastatic breast cancer.

On the advocacy front, I started going to Capitol Hill to lobby lawmakers to support health care For more first-person stories: cancerhealth.com/stories

legislation for veterans and speaking at events around the country.

Every day, I get texts, emails and phone calls from women who are newly diagnosed. Women, especially Black women, want to talk to someone who understands. I tell them to advocate for themselves and not to let doctors dismiss their concerns. I’m out there fighting for them, fighting for change, fighting for equal standards of care. Progress is coming, but it’s slow. When I was diagnosed, for instance, I never saw commercials for breast cancer drugs featuring African-American women. And I see that now.

December 2019 I’m still on the drug from the clinical trial, now approved by the Food and Drug Administration.

One of my goals is to help make African-American women aware of the importance of taking part in clinical trials. Black Americans mistrust the medical system because of a long history of abuse and exploitation, but I’m doing my best to encourage Black folks to trust the system because clinical trials can be lifesaving. This latest clinical trial helped to extend my life. Plus, of course, my doctor and my faith in God.

cancerhealth.com

SPRING 2020

CancerHealth 13

Denise Delatorre became one of the first people in the country to receive the cutting-edge cancer treatment called CAR-T therapy.

BY ABBY SAJID PHOTOGRAPHY BY ARI MICHELSON

IN DECEMBER 2015, AT AGE 56, DENISE DELATORRE, WAS sent home to die. The Southern California real estate agent had non– Hodgkin lymphoma, which forms in the lymphatic system, where immune white blood cells are made. The 32 tumors spread throughout her body hadn’t responded to multiple rounds of aggressive chemotherapy.

Denise Delatorre wakes up every day grateful to be alive.

Delatorre and her son, Ricki, walking her dogs at a beach near her home

But she didn’t die. Today, she is thriving, thanks to a new kind of “living drug” that reprograms a person’s own disease-fighting T cells to attack cancer. Admits Delatorre, “I shouldn’t even be talking to you right now.”

DENIAL, THEN DEVASTATION Delatorre had gone to her ob-gyn complaining of excruciating back pain, night sweats, bloating, indigestion and a lump around her midsection.

She worried it was ovarian cancer. But her doctor dismissed the lump as fat and blamed her other symptoms on menopause.

Delatorre insisted on further tests. Even the ultrasound technicians gave her the all-clear—until she directed their instrument to the mass near her stomach. “Once they moved the wand over that lump, their expressions turned to ash,” she recalls. A few days later, an oncologist examined her and noticed a new lump on her neck.

The diagnosis: diffuse large B-cell lymphoma, the most common type of non–Hodgkin lymphoma. It had spread through her lymph system. Other specialists confirmed the awful news. To cope, Delatorre checked herself into a weeklong holistic healing retreat. But the pain from the new neck tumor was so intense that she cut the retreat short after three days and returned home to start chemotherapy.

She was optimistic. Her cancer was treatable and had a 60% remission rate. She underwent four rounds of outpatient chemotherapy with a four-drug cocktail, which she tolerated well. She devoted herself to eating healthier and reducing stress. But she achieved only partial remission, which meant going at the cancer even harder.

The next treatment required checking into a hospital for a week to add a fifth drug to the cocktail, administered in two consecutive 96-hour infusions. She worked on real estate deals from her hospital bed, wearing fuzzy pajamas, as her 21-year-old son, Ricki, delivered meals to her room.

“I went through it like a champ,” she says.

But the day she got the scan results was devastating.

Her oncologist couldn’t look her in the eye. “This is the

part of my job that I hate,” her doctor said. “You have six months to live. Make plans.”

Delatorre drew on inner strength that came from her faith. “I believe in God, and where there’s God, there’s hope,” she told her doctor. “I’m going to keep fighting this disease until there’s no more hope.”

First thing, she broke the news to Ricki. “I said the therapy didn’t work, and I’m going to die,” she recalls.

“We just held each other and cried.” Delatorre is a single mom, and she and Ricki have little family support on the West Coast. She’d be leaving him all alone if she died, and she felt like a failure as a parent.

THE THERAPY CAME JUST IN THE NICK OF TIME.

16 CancerHealth SPRING 2020 cancerhealth.com

REMEMBER THAT NEWSPAPER CLIPPING? But she didn’t give up. She recalled a Los Angeles Times article a client had sent her a few months earlier about a clinical trial for an experimental treatment called CAR-T. At the time, she assumed chemotherapy would work for her, but now, the news provided a beacon of hope.

She called the National Cancer Institute and learned that two LA-area hospitals were enrolling patients. One had its slots already filled. But the UCLA Health trial, run by oncologist John Timmerman, MD, was still open.

He’d been researching lymphoma immunotherapy for decades, with early support from the Damon Runyon Cancer Research Foundation.

Timmerman answered the phone. Delatorre argued her case. Yes, she qualified, he soon determined, and the timing was perfect. But she was running out of time.

When new tests showed that her cancer had advanced so rapidly that she had only a few months to live, not six, she skipped to the front of the line.

T cells were collected from her blood and genetically engineered to express a synthetic protein called a chimeric antigen receptor, or CAR, on their surface. This modification would allow them to target and destroy her cancer

THIS IS MORE THAN HOPE.

THIS IS REMISSION. YESCARTA® is the first CAR T therapy for adults with certain types of non-Hodgkin lymphoma. YESCARTA empowers your immune system to destroy cancer cells, making complete remission possible when other treatments fail.

In a clinical study of 101 patients with non-Hodgkin lymphoma who had failed other treatments, YESCARTA helped 51% (52 out of 101) of patients achieve complete remission and 21% of patients achieve partial remission with ~9 month minimum follow-up. Not all patients in the clinical study who achieved a complete remission remain in remission.

• Complete Remission is the disappearance of all signs of cancer in response to treatment.

This does not mean the cancer has been cured • Partial Remission is a decrease in the size of a tumor, or in the extent of cancer in the body, in response to treatment

Learn more at getstartedwithYESCARTA.com

APPROVED USE YESCARTA is a treatment for your non-Hodgkin lymphoma. It is used when you have failed at least two other kinds of treatment. YESCARTA is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

IMPORTANT SAFETY INFORMATION What is the most important information I should know about YESCARTA? YESCARTA may cause side effects that are life-threatening and can lead to death. Call or see your healthcare provider or get emergency help right away if you get any of the following: • Fever (100.4°F/38°C or higher) • Difficulty breathing • Chills or shaking chills • Confusion

• Dizziness or lightheadedness • Severe nausea, vomiting, or diarrhea • Fast or irregular heartbeat • Severe fatigue or weakness

It is important to tell your healthcare provider that you received YESCARTA and to show them your YESCARTA Patient Wallet Card.

Your healthcare provider may give you other medicines to treat your side effects.

Before getting YESCARTA, tell your healthcare provider about all your medical problems, including if you have or have had: • Neurologic problems (such as • Liver problems seizures, stroke, or memory loss) • Kidney problems • Lung or breathing problems • A recent or active infection • Heart problems Tell your healthcare provider about all the medications you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

How will I receive YESCARTA? • Since YESCARTA is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), which will concentrate your white blood cells.

• Your blood cells will be sent to a manufacturing center to make your YESCARTA.

• Before you get YESCARTA, you will get 3 days of chemotherapy to prepare your body.

• When your YESCARTA is ready, your healthcare provider will give it to you through a catheter placed into your vein (intravenous infusion).

The infusion usually takes less than 30 minutes.

• You will be monitored where you received your treatment daily for at least 7 days after the infusion.

• You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting YESCARTA. Your healthcare provider will help you with any side effects that may occur.

• You may be hospitalized for side effects and your healthcare provider will discharge you if your side effects are under control, and it is safe for you to leave the hospital.

• Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

What should I avoid after receiving YESCARTA? • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get YESCARTA because the treatment can cause sleepiness, confusion, weakness, temporary memory and coordination problems.

• Do not donate blood, organs, tissues, and cells for transplantation.

What are the possible or reasonably likely side effects of YESCARTA? The most common side effects of YESCARTA include: • Fever (100.4°F/38°C or higher) • Low white blood cells (can occur with a fever) • Low red blood cells • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath)

• Fast heartbeat • Confusion • Difficulty speaking or slurred speech • Nausea • Diarrhea

These are not all the possible side effects of YESCARTA. Call your healthcare provider about any side effects that concern you. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please read the accompanying Important Facts before you receive YESCARTA.

CAN521091.pgs 02.24.2020 16:07

ESA

IMPORTANT FACTS This is only a brief summary of important information about YESCARTA and does not replace talking to your healthcare provider about your condition and your treatment.

(yes-kar-ta) THE MOST IMPORTANT INFORMATION TO KNOW ABOUT YESCARTA® YESCARTA may cause side effects that are life-threatening and can lead to death. Call or see your healthcare provider or get emergency help right away if you get any of the following: • Fever (100.4°F/38°C or higher) • Difficulty breathing • Chills or shaking chills • Confusion • Dizziness or lightheadedness • Severe nausea, vomiting, or diarrhea • Fast or irregular heartbeat • Severe fatigue or weakness It is important to tell your healthcare provider that you received YESCARTA and to show them your YESCARTA Patient Wallet Card. Your healthcare provider may give you other medicines to treat your side effects.

ABOUT YESCARTA YESCARTA is a treatment for your non-Hodgkin lymphoma.

It is used when you have failed at least two other kinds of treatment. YESCARTA is different than other cancer medicines because it is made from your own white blood cells, which have been modified to recognize and attack your lymphoma cells.

BEFORE RECEIVING YESCARTA, TELL YOUR HEALTHCARE PROVIDER ALL ABOUT YOUR MEDICAL PROBLEMS, INCLUDING IF YOU HAVE OR HAVE HAD: • Neurologic problems (such as seizures, stroke, or memory loss) • Lung or breathing problems • Heart problems • Liver problems • Kidney problems • A recent or active infection Tell your healthcare provider about all the medications you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

HOW YOU WILL RECEIVE YESCARTA • Since YESCARTA is made from your own white blood cells, your blood will be collected by a process called “leukapheresis” (loo-kah-fur-ee-sis), which will concentrate your white blood cells.

• Your blood cells will be sent to a manufacturing center to make your YESCARTA. • Before you get YESCARTA, you will get 3 days of chemotherapy to prepare your body.

(Continued)

• When your YESCARTA is ready, your healthcare provider will give it to you through a catheter placed into your vein (intravenous infusion). The infusion usually takes less than 30 minutes.

• You will be monitored where you received your treatment daily for at least 7 days after the infusion.

• You should plan to stay close to the location where you received your treatment for at least 4 weeks after getting YESCARTA. Your healthcare provider will help you with any side effects that may occur.

• You may be hospitalized for side effects and your healthcare provider will discharge you if your side effects are under control, and it is safe for you to leave the hospital.

• Your healthcare provider will want to do blood tests to follow your progress. It is important that you do have your blood tested. If you miss an appointment, call your healthcare provider as soon as possible to reschedule.

WHAT TO AVOID AFTER RECEIVING YESCARTA • Do not drive, operate heavy machinery, or do other dangerous things for 8 weeks after you get YESCARTA because the treatment can cause sleepiness, confusion, weakness, temporary memory and coordination problems.

• Do not donate blood, organs, tissues, and cells for transplantation.

THE POSSIBLE OR REASONABLY LIKELY SIDE EFFECTS OF YESCARTA The most common side effects of YESCARTA include: • Fever (100.4°F/38°C or higher) • Low white blood cells (can occur with a fever) • Low red blood cells • Low blood pressure (dizziness or lightheadedness, headache, feeling tired, short of breath) • Fast heartbeat • Confusion • Difficulty speaking or slurred speech • Nausea • Diarrhea These are not all the possible side effects of YESCARTA. Call your healthcare provider about any side effects that concern you. You may report side effects to the FDA at 1-800-FDA-1088.

GET MORE INFORMATION • This is only a brief summary of important information about YESCARTA. Talk to your healthcare provider to learn more.

• Visit www.YESCARTA.com or call 1-844-454-KITE (5483).

YESC0133 02/2020

YESCARTA, the YESCARTA Logo, KITE, and the KITE Logo are trademarks of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc. © 2020 Kite Pharma, Inc. All rights reserved. YESC0137 02/2020

CAN521092.pgs 02.24.2020 16:09

ESA

cells. It took 17 days to grow the hundreds of millions of new cells she needed. By the time Delatorre showed up for her infusion, her cancer had already spread to her spine.

“It was very clear that the disease was sort of galloping along,” says Timmerman. “The therapy came just in the nick of time.”

The results were miraculous. “Within six weeks, the 32 tumors had gone down to six, and then the six to three, and then the three to two, then the two went down to one,” Delatorre says. Today, just one of her tumors remains, and researchers think CAR-T cells in her body continue to fight the cancer. “I am a bionic woman,” she says.

LIFE-CHANGING DIAGNOSIS Delatorre, now 60, credits CAR-T therapy with saving her life, along with faith, hope and healthier habits. But she credits cancer with changing her entire perspective.

“There are so many components to true healing,” she says,

IT’S STILL EARLY DAYS FOR THE CAR-T field. Since 2017, the Food and Drug Administration (FDA) has approved two CAR-T therapies for people for whom other treatments have failed. Both are approved for adult non–Hodgkin lymphoma, which Delatorre has, and one is also approved for acute lymphoblastic leukemia in children and young adults. Recent clinical trials have had positive results for multiple myeloma—perhaps the next cancer to get FDA approval— as well as mantle cell lymphoma and chronic lymphocytic leukemia (see page 4). “I’ve never been so excited, but the challenges are so clear,” says UCLA’s John Timmerman, MD. Among them: RECURRENCE. CAR-T cells sometimes stop working. Within a year after successful therapy, depending on cancer type, between 30% and 60% of patients are no longer in remission.

“and one of them is leading a joy-fi lled life.”

Today, she says she wakes every day grateful to be alive.

She finds joy in small things, like hummingbirds visiting her newly installed feeders. She spends less time on social media and more time walking outdoors with her beloved dogs. Financial success holds less importance.

Back when Delatorre was undergoing chemo, a nurse who herself had kicked breast cancer told her that one day she’d see her illness as the best thing that ever happened to her. At the time, she says, “I looked at her like she had five heads.”

But the nurse was right. “It’s the most devastating thing I’d ever been through,” Delatorre says. “It turned my life upside down, and you know what? I will tell you that cancer was the best thing that ever happened to me. We never know how strong we are until being strong is the only choice we have. I’m living in an entirely new world of hope and possibilities.” ■

Delatorre is an exception—her CAR T-cell levels remain elevated after just one infusion in 2016. By studying her and others, researchers aim to improve CAR-T persistence and ward off recurrence.

SIDE EFFECTS. Some can be serious, like cytokine release syndrome, an immune system reaction marked by dangerously high fevers, low blood pressure and organ damage due to inflammation. But as CAR-T therapy is more widely used, doctors have become more adept at managing this and other side effects.

SOLID TUMORS. CAR-T therapies work best against blood cancers like lymphoma because the cancer cells are more accessible. Applying CAR-T to brain, breast, lung, pancreas and other solid tumors is one of the next big frontiers. At Massachusetts General Hospital Cancer Center in Boston, for example, Harvard

Medical School’s Marcela Maus, MD, PhD, is working to adapt CAR-T therapy for glioblastoma, the type of brain tumor that took the life of Senator John McCain.

TIME AND MONEY. Right now, CAR-T cells must be painstakingly engineered and manufactured for each patient, which takes around two weeks. But some people are so sick they can’t wait, or chemotherapy has damaged their T cells so much that they can’t be used. Plus, the expense is extraordinarily high— as much as $475,000 for the drug alone. That’s why many researchers are working on developing off-the-shelf therapies made from donor T cells, which are being tested at academic hospitals across the country.

For more survivor profiles: cancerhealth.com/magazines cancerhealth.com

SPRING 2020

CancerHealth 19

This team-based approach can ease symptoms and improve quality of life for anyone living with cancer at any stage.

BY BOB BARNETT

BACKGROUND: ISTOCK

F

OR IRIS VANDER PLUYM, 53, A NEW YORK CITY

writer and musician who was diagnosed with Stage III colorectal adenocarcinoma in the late summer of 2017, the really bad stuff happened afterward. “I no longer had cancer, but the treatments have been a lot crueler than the disease ever was,” she says.

Treatment started that fall. Pluym (a pseudonym to protect her privacy) had two four-week rounds of chemotherapy followed by 28 rounds of radiation therapy. In early 2018, after the tumor had shrunk, she had surgery, which entailed a temporary ileostomy (an opening in the abdomen where stool is redirected) to let her colon heal.

Infections landed her back in the hospital twice. In May 2018, she started more chemo, which left her so weak she couldn’t lift her arms to shampoo her hair. By July, her surgeon reversed the ileostomy. Scans showed no cancer.

But by September, her pain was increasingly unbearable.

Late radiation effects caused significant portions of her formerly healthy intestines, cervix and vagina to deteriorate.

She had recurrent urinary tract infections and urinary and bowel incontinence. Hyperbaric chamber therapy (breathing pure oxygen in a pressurized room) helped with the pain somewhat but also caused capillaries in her eyes to burst, which required laser treatments and painful injections.

“For those keeping score at home,” she wrote in her pseudonymous blog, “Yes, we are now treating the side effects of treatment for side effects of treatment for cancer.”

By December 2018, when she saw an ob-gyn oncologist about repairing her vaginal and cervical tissue, she was

referred for a new kind of help. In January 2019, she blogged, “I get myself a palliative care specialist. OMG you guys! Everyone should go get one right now!”

WHAT IS PALLIATIVE CARE? Sometimes called supportive or comfort care, palliative care is specialized team-based medical care for people living with a serious illness. The focus is on improving quality of life at any stage of disease. In cancer care, it can help people whose treatments may cure them, people whose treatment is designed to manage their cancer as a chronic illness and people who are facing the end of life.

A modern palliative care team typically includes four experts: a physician, a nurse practitioner, a social worker and a chaplain. These individuals work hand in glove with the oncology team to help manage symptoms (pain, fatigue, nausea, weight loss, breathing problems), psychological issues (anxiety, depression), practical issues (transportation, finances) and spiritual concerns (grief, bereavement).

“We are good at symptom management, communication and care coordination,” says R. Sean Morrison, MD, who founded the palliative care program at Mount Sinai Health System in New York City, where Pluym was treated.

In 1997, it was one of five in the United States, but “now every academic medical center in the country has one. We help match treatments to patient goals and coordinate care in a very fragmented health care system.” Morrison is also director of the National Palliative Care Research Center.

Even now, however, most people don’t understand pallia-

cancerhealth.com

SPRING 2020

CancerHealth 21

tive care—even professionals who care for people with cancer. “Doctors, nurses, clinicians, most say they know what it is, but they are wrong—they equate it with hospice or end-of-life care,” Morrison says. While palliative care did originate with the hospice movement in the late ’60s, it has evolved. “We’ve transformed some cancers, such as ovarian cancer, into chronic illnesses people live with, but that means that they are experiencing not only the distress caused by the disease but also by the treatments.” That association with end-of-life care means some people are scared to meet with palliative care specialists, says Mount Sinai Health System president David Reich, MD. Instead, he says, “You should be delighted. These are amazing, empathic people. They will make your life better.”

If your cancer treatment is simple and curative and side effects are minimal, you probably won’t need palliative care.

But it’s an important option for anyone who experiences or can expect one or more distressing symptoms, including those undergoing intensive treatments such as stem-cell transplant, treatment for head and neck cancer or “anyone facing an uncertain prognosis,” says Morrison. Private insurance, as well as Medicaid and Medicare, may cover many of the clinical services involved in palliative care.

The best time to start? Right after diagnosis. Research has found that providing patient-centric palliative care early in treatment improves outcomes, often as effectively as the latest drug. In a landmark 2010 study published in The New England Journal of Medicine, patients with metastatic non-small-cell lung cancer who received palliative care lived an average of 11.6 months versus 8.9 months— even though they opted for less aggressive treatment.

Subsequent studies have confirmed those benefits.

Easing burdens of pain, fatigue, depressive symptoms, sleep problems and worry often gives people the strength they need to carry on with their cancer therapies. Says Morrison, “When we provide palliative care at the onset of cancer care, people feel better, are more likely to complete treatment and live longer, and they and their family experience a better quality of life.”

STRETCHER TO WHEELCHAIR TO WALKING Radiation oncologist Kavita Dharmarajan, MD, who in 2013 started one of the first palliative radiation centers in the country at Mount Sinai, remembers getting a call about a woman in her 50s who had metastatic stomach cancer with lesions in her liver and lungs and a blockage in her stomach. The bedridden woman couldn’t eat, was

22 CancerHealth SPRING 2020 cancerhealth.com

constantly vomiting and had lost 50 pounds. She was too sick for more chemotherapy or discharge yet refused hospice.

Dharmarajan gave her a five-day course of radiation.

That was enough to clear the blockage while adding little or no extra symptom burden. The woman was discharged to a rehab center. A month later, she came back for her follow-up visit. She was brought in on a stretcher, but her mass had shrunk, her appetite had improved and she felt better. She started chemo again. Three months later, she returned—in a wheelchair. Three months after that, when she came back again, she was taking two chemo agents and walked in. “She survived at least two years longer than her prognosis, which had been weeks,” says Dharmarajan.

Radiation is a double-edged sword. It is remarkably effective for pain relief, especially for bone metastasis, significantly easing pain more than half the time. But it can have serious side effects, including fatigue and skin burns. To develop a palliative plan, Dharmarajan works closely with the patient, family and the oncology team to elicit treatment goals and preferences.

Larger doses of radiation may shrink a tumor more but leave the patient in distress. When a cure isn’t possible, “lower doses may not completely eradicate the tumor but can shrink it enough to relieve pain,” she says. “My mindset is to give what I need to without hurting the person.”

WALK, DON’T RUN “Quality of life may mean doing very simple things with your loved ones,” says Mount Sinai geriatrician and palliative care expert Bethann Scarborough, MD. For cancer-related fatigue, she’ll address medical issues (blood count, thyroid levels), prescribe medications (steroids, stimulants), help with sleep issues and work to reframe expectations. “The goal may be to help you harness your energy so you can clean the house or walk your dog.”

She recalls one man in his 50s with multiple myeloma.

He’d been a competitive runner. Now, he was so fatigued that he gave up on exercise entirely, which depressed him deeply. She gently asked him to try walking a mile in the morning. He did, and it felt good. Then he started walking a mile in the evening too. That felt even better.

At its core, palliative care is about helping people clarify what is most important to them and use that self-knowledge to achieve what they really want. “Our role is to provide a safe and neutral space where you can ask questions, become informed and get the treatment to achieve the goals you want,” says Scarborough. Palliative care can help people

choose how they want to live—and, if it comes to that, how they want to die.

DIFFICULT DECISIONS “Great palliative care means learning from people what their goals are, because people have priorities for life besides just survival,” Atul Gawande, MD, author of Being Mortal, told the audience at the 2019 American Society of Clinical Oncology annual meeting. “Our core mission is to enable their goals—health, family, financial—and recommend to them what, from our experience, gives them the best possibility of achieving those goals.”

Clinicians can help patients clarify their goals with a few simple questions, he said. What are your goals for quality of life? What matters to you most? What, exactly, does that mean in your everyday life? Where will you draw the line at what you will accept? He described one patient who had a simple, concrete criterion. “He told me, ‘If I can eat chocolate ice cream and watch football on television, keep going. If I can’t, let me go.’” That, said Gawande, “is the best living will I have ever heard.”

When treatment options narrow, or disappear entirely, addressing the emotional impact is essential, says Mount Sinai medical oncologist and palliative care physician Cardinale Smith, MD, PhD. She’ll acknowledge how difficult it may feel to learn that there are no more available options. Opening up that emotional discussion can lead patients to identify very personal goals.

“I may ask, ‘Now, with whatever time you have, what do you want to achieve?’” she says. “Treatment options can help meet those goals.” Some people are willing to go through the toxicity even for an extra week of life, while others value quality over quantity. “If we don’t invite the discussion, we won’t know what is right for you,” says Smith.

MAKING MUSIC AGAIN By the time Pluym went to see her palliative care physician, she was bedridden, leaving the house only for appointments

and treatments. Her new palliative care doctor consulted with her oncologist and gynecologist and performed physical, emotional and neurological exams. Pain relief was paramount. “I’d be having an ordinary good day, but then physical pain would throw me into an emotional tailspin,” recalls Pluym.

Her new doctor told her, “We’ve got to get you some pain relief.’” Pluym’s oncologist had prescribed morphine and other opioid painkillers, but in low amounts that her palliative care doctor referred to as “little old lady” doses.

“My oncologist didn’t want to go higher, and I didn’t want to get addicted,” recalls Pluym.

Her palliative care doctor switched her to just morphine, doubling the dose and increasing the frequency to every eight hours from every 12. “When that didn’t work, she doubled it again,” recalls Pluym. She also prescribed gabapentin, a nonnarcotic pain reliever, and went to bat with the insurance company and the pharmacy to get approvals. “She told me, ‘When we are talking about pain for a cancer patient, we take the gloves off.’”

By the end of March 2019, Pluym’s pain wound down.

Her palliative care doctor weaned her off the drugs safely.

“I don’t take any pain medications at all now, not even Advil.”

That spring, she bought a new keyboard and started playing at her neighborhood bar. She took the summer of 2019 off from treatment and traveled to see friends in Knoxville, Tennessee, and Duluth, Minnesota. In November, she had major reconstructive surgery and once again benefited from palliative care for temporary pain relief. She still gets tired and may need a long nap after, say, doing laundry. “These normalcies that are taken from you—they may seem insignificant, but they are huge,” she says. “I’ve gotten little pieces of my life back.”

Her only regret is that she wasn’t introduced to palliative care earlier. “I would have liked to have known my palliative care doc when I was getting radiation and started to have pain,” she says. “She’s an ally. She was the last link in my chain, but I wish she had been one of the first.” ■

PALLIATIVE CARE RESOURCES The Center to Advance Palliative Care runs a website (GetPalliativeCare.org) that provides educational resources, including patient handouts, checklists, webinars, videos and personal stories. It also has a national palliative care provider directory that can be searched by ZIP code. For advance care planning, which helps individuals identify preferences for treatment if they become incapacitated, useful sites include Five Wishes (FiveWishes.org) and Prepare for Your Care (PrepareForYourCare.org).

Learn more about palliative care: cancerhealth.com/palliative

cancerhealth.com

SPRING 2020

CancerHealth 23

W

E’RE ALL FAMILIAR WITH TRADITIONAL

vaccines that prime the immune system to prevent infections. But what if a similar approach could be used to fight cancer?

Cancer vaccines are not a new idea, but they fell out of favor after disappointing results in early studies. Now, a better understanding of how cancer develops and how the immune system responds to it have renewed hope that therapeutic vaccines could halt disease progression, prevent relapse and perhaps even offer a cure.

“T cells are hardwired to go after invaders like viruses and bacteria. The idea behind a cancer vaccine is to try to train the immune system to recognize tumor cells as a target,” says Catherine Wu, MD, of Dana-Farber Cancer Institute and the Broad Institute and a recipient of a Damon Runyon Cancer Research Foundation Clinical Investigator Award. “Cancer has figured out how to make itself invisible to the immune system. What we’re trying to do with vaccines is remove that cloak of invisibility.”

Some conventional vaccines prevent malignancies by protecting against cancer-causing pathogens such as human papillomavirus (HPV) and hepatitis B virus (see “Vaccines to Prevent Cancer,” page 8). But therapeutic vaccines aim to treat cancer that’s already present. The challenge is to train immune cells to recognize and attack cancer cells while leaving healthy cells alone.

“With modern cancer treatments, we can harness the amazing ability of the immune system to fight cancer,” says James Gulley, MD, PhD, head of the immunotherapy section at the National Cancer Institute’s Center for Cancer Research. “The problem is that they don’t work in all patients, often because there’s no underlying immune recognition of the cancer. Vaccines can help initiate or expand immune responses against tumors.”

24 CancerHealth SPRING 2020 cancerhealth.com

Unlike CAR-T therapy and related approaches that use genetic engineering to insert natural or synthetic cancertargeting receptors into T cells in a lab (see “Pioneering Patient,” page 14), vaccines harness the immune system’s inherent ability to fight disease. CAR-T works only as long as the transferred cells last, but vaccine-activated immune cells can persist indefinitely. Vaccines are also less costly and cause less collateral damage to healthy cells.

“If you can generate a good immunological memory response, the daughter cells could be around for decades, potentially for a lifetime,” Gulley explains. “It’s like, give a man a fish and you feed him for a day, teach a man to fish and you feed him for a lifetime.”

HOW VACCINES WORK T cells and other immune cells recognize proteins known as antigens. While preventive vaccines largely rely on antibodyproducing B cells, therapeutic vaccines promote T-cell activity. The proteins are taken up by professional antigenpresenting cells, such as dendritic cells, and displayed for T cells to recognize. CD4 “helper” T cells coordinate the immune response while CD8 “killer” T cells directly attack cancer.

Researchers have tried many approaches over the years to train immune cells to fight cancer. Early vaccines used whole cells derived from tumors, but using selected antigens works better. Some vaccines contain bits of DNA or RNA that encode cancer antigens. Others use short peptides, or strings of amino acids. Long peptides, which bring both CD4 and CD8 T cells into play, trigger stronger immune responses.

Some vaccines administer DNA or peptides by injection.

In other cases, weakened viruses are used as vectors to deliver cancer antigens to immune cells. Many vaccines

Therapeutic cancer vaccines train the immune system to fight cancer.

BY LIZ HIGHLEYMAN

include substances known as adjuvants that boost immune responses. A more sophisticated—and therefore more time-consuming and expensive—approach involves collecting a sample of a patient’s white blood cells, exposing the dendritic cells to cancer antigens in a lab and reinfusing the trained cells back into the body.

TARGET SELECTION

ISTOCK

Selecting the right antigens is the key to a successful vaccine.

Three broad types of targets may be used: self-antigens, viral antigens and cancer-specific antigens.

Some vaccines target tumor-associated antigens that are produced by certain normal cells but are expressed at abnormally high levels on cancer cells.

The first approved cancer vaccine, Provenge (sipuleucel-T), uses the dendritic cell method to target prostatic acid phosphatase, a protein found at high levels in prostate tumors. Another prostate cancer candidate, PROSTVAC, uses two viral vectors to deliver genes for prostate-specific antigen. Although P R O S T VA C appeared promising in early studies, it

failed to show a survival advantage in a Phase III trial led

by Gulley.

SurVaxM is a peptide vaccine that targets survivin, a protein that helps cancer cells grow out of control. A study of people with glioblastoma brain cancer found that those who received the vaccine lived about T cells (pink) twice as long as expected. attacking a Vaccines can also ward off recurrence cancer cell

Catherine Wu, MD, and James Gulley, MD, PhD

WHAT WE’RE TRYING TO DO WITH VACCINES IS REMOVE CANCER’S CLOAK OF INVISIBILITY.

PERSONALIZED VACCINES An advantage of both tumor-associated and virus-derived antigens is that they are shared by many patients and can be used to make off-the-shelf vaccines.

But personalized vaccines may hold greater promise.

Cancer cells evolve rapidly, and as they mutate, they display unusual antigens—known as neoantigens—on their surface. Wu and other researchers are developing algorithms to predict which neoantigens are most likely to be visible to the immune system and elicit a robust response when used in a vaccine.

Because most neoantigens are unique to an individual, these vaccines are tailored to each patient. After analyzing tumor DNA, Wu’s team selects the 20 or so most

26 CancerHealth SPRING 2020 cancerhealth.com

promising neoantigens, synthesizes them into long peptides and mixes them with immuneboosting adjuvants. “That’s what goes into the syringe,” she says. In a Phase I trial, they created NeoVax personalized vaccines for six melanoma patients at high risk for recurrence after surgery.

Two years after vaccination, four of the study participants remained cancer-free.

VACCINE CHALLENGES

In order for T cells that are activated by vaccines to work, they must be present in sufficient numbers, must be functional and must get inside tumors to do their job.

Many people with cancer have an aging immune system, and the use of chemotherapy and radiation can damage immune cells. What’s more, cancer has evolved numerous ways to defend itself. The tumor microenvironment presents physical barriers to T-cell entry, and some tumors can turn off immune responses.

So-called hot tumors have many neoantigens that attract T cells, while cold tumors contain few immune cells and respond poorly to immunotherapy. Unfortunately, most common solid tumors, like breast, prostate and lung cancer, fall into the latter category. Several of the cancer vaccines that have failed in Phase III trials were being tested alone in cold tumors.

But combining vaccines with other types of immunebased treatment can help overcome these challenges. “If we can give a vaccine that tells immune cells, ‘Hey, here’s the target,’ we can turn a cold tumor hot,” says Gulley.

Checkpoint inhibitors—monoclonal antibodies that block receptors on T cells that regulate immune function— are particularly promising partners. Some tumors can hijack these receptors to turn off T-cell activity; checkpoint blockers release the brakes. But these drugs

(WU) COURTESY OF DANA-FARBER CANCER INSTITUTE; (GULLEY) COURTESY OF THE NATIONAL CANCER INSTITUTE

of cancer that has been put into remission by other types of treatment.

NeuVax (nelipepimut-S), which contains HER2 peptides, and PolyPEPI1018, made from antigens found in colorectal tumors, delayed disease progression in people with triplenegative breast cancer and metastatic colorectal cancer, respectively, when added to standard maintenance therapy.

However, the immune system does not respond as strongly to antigens that occur on normal cells as it does to those it sees as foreign.

Some promising vaccines target virus-derived proteins expressed in cancers caused by those viruses. These antigens are recognized as foreign and trigger a stronger immune response.

One widely studied approach trains immune cells to recognize the E6 and E7 antigens of HPV, which causes several types of cancer. In Phase II studies, two vaccines that target these antigens—tipapkinogen sovacivec and VGX-3100—led to remission in women with precancerous cervical cell changes. VGX-3100 is now being tested in HIV-positive people with high-grade anal precancer.

COURTESY OF CANCER RESEARCH INSTITUTE

don’t work for all patients or for all types of cancer.

Several studies have already shown that combining vaccines with checkpoint inhibitors—in effect releasing the brakes and stepping on the accelerator at the same time—leads to better responses than either therapy alone.

In Wu’s melanoma study, the two patients who relapsed after receiving personalized NeoVax vaccines experienced complete remission after adding the PD-1 checkpoint inhibitor Keytruda (pembrolizumab). The researchers are now studying this approach in people with kidney and ovarian cancer.

CIMAvax, a lung cancer vaccine developed in Cuba, showed promising efficacy when combined with the checkpoint blocker Opdivo (nivolumab).

Another study saw good results using ISA 101, a vaccine containing HPV E6 and E7, plus Opdivo in people with incurable oral cancer. And after failing on its own, PROSTVAC is now being tested along with various checkpoint drugs.

Many more cancer vaccine studies are underway. ClinicalTrials.gov lists nearly 200 open trials, many testing combinations. “Keep in touch with your oncologist, keep your ear to the ground and be aware of opportunities to participate in these exciting studies,” Wu advises.

If this research pans out, vaccines could become an integral part of cancer immunotherapy.

“We know what the immune system can deliver—deep and durable responses, with tumors shrinking away and staying away,” says Gulley. “I’m hoping that with a combination vaccine approach, we can get tumors that typically wouldn’t respond to immunotherapy to now be responsive. I think in the next year or two, we’re going to see some really nice data coming out.” ■ Learn more about the latest treatments: cancerhealth.com/immunotherapy

IN 2003, CHRISTINE SABLE WAS LEADING an active life as a full-time real estate professional and mother of two. But after experiencing persistent abdominal pain, a visit to her doctor revealed that she had Stage IIIC ovarian cancer.

“The prognosis back then was less than 20% five-year survival,” she says.

“Typically, women would be treated with chemotherapy and surgery and might go into a short remission, but the cancer almost always came back.”

Sable, now 61, underwent surgery and several Christine cycles of debilitating chemo, and her cancer went Sable into remission. But knowing the odds, she wanted to do something proactive to prevent recurrence.

She learned about a therapeutic ovarian cancer vaccine clinical trial led by Kunle Odunsi, MD, PhD, of Roswell Park Comprehensive Cancer Center in Buffalo, after her husband heard a news blurb about the research on a local TV news program.

Sable started on the trial in February 2004, receiving an experimental vaccine that trains T cells to recognize an antigen on ovarian tumors.

“I didn’t know there was such a thing as a cancer vaccine,” she says. “I didn’t know anything about immunotherapy. But I did like the idea of finding something that would work with my immune system.”

Sable received 15 injections, spaced three weeks apart, over the course of about a year. Each time, she traveled more than 300 miles to Buffalo from her home in Lancaster, Pennsylvania, paying for travel expenses out of her own pocket.

Sable knew that experimental therapies in early stages of clinical trials are a gamble—they might not be effective, or they might cause unacceptable side effects.

“I knew there was a good chance that it might not work, but I thought, At least I feel like I’m doing something to move medicine forward,” she recalls. “If it doesn’t help me, maybe it’ll help some other woman down the road.”

The vaccine didn’t work for everyone in the trial; some participants experienced disease recurrence. But Sable was one of the lucky ones. It’s been 16 years, and her cancer has not come back.

During those years, Sable began attending immunotherapy patient summits presented by the Cancer Research Institute (CRI), learning about new treatments and sharing her knowledge and experiences as a CRI ImmunoAdvocate.

“It’s very important to trust the advice of your doctor, but you also need to do your own research and advocacy,” she says. “Do a little bit of research for your doctor, bring it in, talk it over. In this day and age, we’re not just patients, we’re medical consumers, and we need to really look at what is the best fit for us.”

cancerhealth.com

SPRING 2020

CancerHealth 27

YOUR TEAM

BY KURT ULLMAN

Finding the Best Clinical Trial David J. Schwab, CCRP, is a clinical research coordinator for the radiation oncology department at the Siteman Cancer Center in St. Louis.

What does a clinical research coordinator do?

My team screens patients for applicable clinical trials. For progressive disease where initial treatments do not result in a cure, your treating team will reach out to our group to see if you may be eligible for a particular trial. It depends on eligibility criteria, diagnosis, how well you are functioning, tumor markers and other variables.

We’ll prescreen you, and, if your oncologist agrees, present the trial to you. If you consent, we will move forward with screening and trial enrollment.

What happens next?

We go over the basics, such as what is being studied, time and other commitments, and side effects. We make sure you are fully informed about what to expect, help with paperwork and, if everything checks out, go forward with enrollment.

Do all cancer centers have these resources?

Not all. However, there are websites you can search to find trials that might be appropriate for you. One of the best is ClinicalTrials. gov. You can search by the type and location of your cancer and other important variables, and it gives contact information for the study managers to pass information along to your oncologist. An advocacy group for your specific type of cancer can also be very useful.

What if the trial isn’t available at my cancer center?

Your oncologist will likely keep track of research being done regionally. If their practice does not have a specific trial available to them, your doctor can refer you to a participating physician or clinic. In these situations, you usually remain a patient of your oncologist. You follow up with the other site’s doctor for studyrelated visits only.

What challenges do you face in your work?

These studies often require that the patient adhere to a visit schedule that is more intense than standard treatment. This can be a burden both in time

28 CancerHealth SPRING 2020 cancerhealth.com

David J. Schwab matches patients with the right clinical trials.

and financial concerns. We work with the patient to minimize their time commitment. For example, if there is a scan coming up, we try to do it on the same day as a regular office visit. We work to limit the back-and-forth needed, especially if you live far away.

What is the most inspiring part of your work?

How strong these patients and their families are always inspires me. They come in every visit.

Instead of giving up, they continue the fight. ■ Who’s on your team? cancerhealth.com/team

COURTESY OF WASHINGTON UNIVERSITY, ST. LOUIS

CLINICAL TRIALS PLAY AN increasingly important role in the treatment of many cancers.

They often provide the best treatment options and give you earlier access to cutting-edge therapies. But finding the best trial for your particular cancer is complex, so many cancer centers offer the services of a clinical research coordinator, also known as a clinical trial navigator.

BY MEAVE GALLAGHER

RESOURCES

Cancer Retreats WHEN YOUR LIFE IS AFFECTED BY CANCER—whether you’re undergoing treatment, caring for someone who is or reclaiming your life as a survivor—a retreat combines natural beauty with fellowship.

Bluebird Cancer Retreats bluebirdmi.org Bluebird Cancer Retreats are free weekend retreats held near Holland, Michigan, that welcome people experiencing cancer, survivors, family members and caregivers.

Camp Wieser me-onefoundation.org Though focused primarily on adults living with cancer, Camp Wieser also welcomes families to its free annual three-day getaway in California’s Santa Cruz mountains.

Camp Good Days campgooddays.org At its upstate New York locations, Camp Good Days and Special Times hosts free weeklong summer camps for children ages 4 to 17 affected by cancer and weekend retreats for adults with cancer as well as families affected by brain tumors.

Cancer Support Community Montana cancersupportmontana.org At Mending in the Mountains, women who have experienced cancer can enjoy a free threeday retreat in Big Sky, Montana.

The retreat emphasizes “selfcare in survivorship” through nutrition, exercise and meditation techniques.

ISTOCK

Camp Kesem campkesem.org Camp Kesem’s free weeklong sleepaway summer camps in 42 states host children ages 6 to 18 who have a parent or guardian with cancer. Camp typically includes sports, arts and crafts, nature exploration and activities.

Camp Mak-A-Dream campdream.org Set in Montana, Camp Mak-ADream offers free programs for kids, siblings, teens, families and women to enjoy the great outdoors. Programs are medically supervised, and activities are designed for anyone affected by cancer.

Discover more resources: cancerhealth.com/resources

Harmony Hill harmonyhill.org Harmony Hill provides free three-day retreats in Union, Washington, for people who have experienced cancer and their caregivers or significant others.

Little Pink Houses of Hope littlepink.org Women and men diagnosed with breast cancer can get away for a week—either alone or with a partner or family—at one of Little Pink Houses of Hope’s 20 free weeklong retreats at locations across the United States and in Costa Rica.

Reel Recovery reelrecovery.org Men at any stage of treatment, recovery or remission are invited to one of Reel Recovery’s free two-and-a-half-day retreats held around the country. Attendees go fly fishing, share their stories and receive peer support.

Send It Foundation senditfoundation.org The Send It Foundation organizes free trips for people ages 21 to 40 who have experienced cancer. Activities include hiking, skiing and snowboarding and mostly take place in Northern California.

Strength for Life strengthforlifeny.org Strength for Life hosts free wellness retreats in Hauppage, New York, for adults living with cancer.

Activities include fitness classes and guest speakers to help participants relax, rejuvenate and find balance after a cancer diagnosis.

Women Beyond Cancer womenbeyondcancer.org All women experiencing cancer are welcome at free Women Beyond Cancer’s retreats, held at Two Sisters Farm in Aiken, South Carolina. Spend time with fellow survivors, rest and relax, and enjoy communal meals.

cancerhealth.com

SPRING 2020

CancerHealth 29

GOOD STUFF

BY MEAVE GALLAGHER

SPRING FORWARD Get outside, grow a garden or get comfy.

Bring the restorative power of healthy gardening indoors with Hudson Valley Seed Co.’s Self-Watering Microgreens Kit ($59.95), which includes a 5.25-inch-square terra-cotta pot, organic soil pellets for four plantings and packets of seeds to grow radishes, beets, arugula and komatsuna Asian greens. You only have to water your seeds once a week (helpful for new or absentminded gardeners) to grow a steady supply of deeply flavorful, nutrient-dense baby greens to add to your meals.

Ready to go outside? Not without good sun protection!

Australian Gold X-Treme Sport Spray Gel ($11.46, 8 oz.) is one of Good Housekeeping’s 10 Best Sunscreens for its value and reliability. The broadspectrum formula is SPF 50, water resistant up to 80 minutes and includes antioxidants and moisturizers for extra protection and care. It’s also PABA-, dye-, alcohol- and gluten-free and never tested on animals.

Spray on a good coat, and safely enjoy the spring sunshine.

Tip: To protect your face, spray it on your hands first before rubbing it on.

In Malignant: How Bad Policy and Bad Evidence Harm People with Cancer ($32.95, Johns Hopkins University Press), Press) Vinayak K. Prasad, MD, MPH, a hematologistoncologist, tackles the thorny topic of cancer drugs—how they’re developed, why they cost what they do and whether they provide real benefits. Prasad’s critique of drug policy and practice also includes a chapter on how people with cancer can advocate for their own best care and treatment. (See page 6 for more.)

30 CancerHealth SPRING 2020 cancerhealth.com

Designed by a breast cancer survivor in consultation with physicians, the EZbra (from $150 for five) is a sterile, disposable, breathable post-surgery bra. It’s easy to put on and adjust to your desired level of compression without help. It’s also absorbent and adhesive-free (to avoid risk of skin injury), allows for simple drain management and can be worn discreetly.

Ease aches and pains with Badger Sore Muscle Rub ($9.99, 2 oz.), made with cayenne pepper and ginger to warm the skin and rosemary and extravirgin olive oil to soften it.

This certified organic natural balm can soothe muscle soreness caused by stress, cancer treatment or cancer itself and is nonirritating for sensitive skin.

Apply it via a gentle massage to stimulate circulation and loosen tight muscles.

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

ÂŽ

The Natural Way to Ease A Queasy Stomach!

Available in: 12 count box and 21 count container Visit our website to find a store or online seller www.threelollies.com | 866-773-4443

CAN520954.pgs 02.19.2020 13:09

ESA

LIFE WITH CANCER

BY JEFF NEURMAN

My Cancer Talk Primer

Cancer Health blogger Jeff Neurman, 46, lives in Dix Hills, New York, with his wife, two sons and their dog. He has chronic lymphocytic leukemia (CLL). suggests that one has outlasted cancer. For many of us, however, that is not really possible. We may be surviving, but that damn cancer is right there along with us.

Endurer: Similar to survivor, but for many, a more accurate descrip­ tion. We haven’t triumphed over cancer, but we are getting along with it—for the time being. I “bor­ rowed” this term from my friend Rudy Fischmann and his Brain Cancer Diaries on YouTube— definitely check it out!—but I think it will catch on with cancer­ites everywhere.

Chemotherapy: Often called simply “chemo”—a kind of nick­ name, as if we were friends (which we most definitely are not)—this anticancer treatment involves taking poison to kill off cells that are already trying to kill you. It is akin to gambling— which will kill the patient first?

Sometimes chemo can actually give one cancer, which really seems unnecessarily redundant and a big waste of time.

Radiation: Sometimes poison just isn’t enough, so we go right for the big guns and try to nuke that tumor out of existence.

Chemo brain: This is an under­

32 CancerHealth SPRING 2020 cancerhealth.com

Jeff Neurman; his sons, Andrew and Will; and his wife, Melissa

studied, misunderstood phe­ nomenon in which chemo causes one to forget certain things. It’s not really surprising, given that chemo is poisoning one’s cells rather indiscriminately.

In my case, those certain things often involve requests to do chores around the house, such as taking out the garbage.

CBD: Pot with the fun parts removed and of debatable efficacy. But if it helps, why not?

Green tea: See CBD regard­ ing efficacy, but even less fun.

Healthy diet and more exercise: These are great! They also don’t cure cancer!

This is a far from complete list.

Thus, if something is not covered above and family members or friends are uncertain, remind them of this simple rule: Silence is golden. ■ For more first-person stories: cancerhealth.com/stories

COURTESY OF JEFF NEURMAN

THERE IS AN AWFUL LOT OF cancer going around these days. Virtually everyone either has it or knows someone who does. Yet very few people actually know how to talk about it pro­ perly, by which I mean without offense, indifference, callous­ ness or, often, plain old igno­ rance. That’s why I’ve provided this handy set of terms for friends and family. Feel free to share it!

Cancer: It’s not a competition, but this word means pretty much the worst thing that can happen to a person. It is a com­ plicated disease that is not es­ pecially well understood. It can travel under assumed identities, including “the Emperor of All Maladies,” as it is a disease that thinks pretty highly of itself.

Warrior: Americans love to make war on all kinds of things, and cancer is no exception. And while anyone with cancer is certainly in a battle for her or his life, there is not a whole bunch that the cancer warrior can actually do. A duel? Swords? Pistols?

The body might be more aptly described as the battleground, but that seems too passive for our combative culture.

Survivor: Another hotly debated term. Some people choose to use it because they are still around to do so. Others prefer not to self­describe this way, in part because the term

QUIZ

THE CANCER HEALTH QUIZ How much do you know about cancer and treatment?

Take our quiz, and check your answers on page 7.

1

2

3

4

ISTOCK

Pancancer drugs treat cancers with the same genetic characteristics wherever they occur in the body. When was the first pancancer drug approved by the Food and Drug Administration (FDA)?

A. 2012 B. 2015 C. 2018 Which celebrity was diagnosed with a malignant pancreatic neuroendocrine tumor, a rare form of cancer that forms in the hormone-producing islet cells of the pancreas?

A. Alex Trebek B. Aretha Franklin C. Ruth Bader Ginsburg D. John Lewis How can vaccines affect cancer?

A. Prevent it B. Treat it C. Both CAR-T therapy, which involves reprogramming a patient’s own white blood cells to fight cancer, has been approved by the FDA to treat: A. Acute lymphoblastic leukemia B. Large B-cell lymphoma C. Chronic lymphocytic leukemia D. Mantle cell lymphoma E. Multiple myeloma F. A and B only G. All of the above

5

The purpose of palliative care is to improve quality of life for people with cancer...

A. After further cancer treatment is no longer possible B. When treatment can extend life but can’t cure the cancer C. When treatment may provide an outright cure for the cancer D. A and B but not C E. All of the above

6

In 2019, Beyoncé’s father, Mathew Knowles, revealed that he had which type of cancer?

A. Prostate cancer B. Colon cancer C. Breast cancer D. Lung cancer

7

Checkpoint inhibitor immunotherapy, which harnesses the body’s immune system to fight cancer, may work better if you...

A. Take probiotics B. Avoid probiotics

8

Xerostomia is a side effect that can be caused by chemotherapy or radiation.

What does it mean?

A. Excessive fatigue B. Dry mouth C. A low white blood cell count D. Breathlessness

9

Targeted therapies act on molecular targets in tumors. Which of the following types of targeted therapy are used to treat breast cancer?

A. PARP inhibitors D. ALK inhibitors B. HER2 inhibitors E. A, B and C C. CDK4/6 inhibitors F. All of the above

10 How many cancer survivors are there in the United States?

A. 0–5 million B. 5–10 million C. 10–15 million D. More than 15 million

To take this quiz online, visit:

cancerhealth.com/quiz

CHSp-20pCV3_Quiz_Treatment_HY.indd 33

cancerhealth.com

SPRING 2020

CancerHealth 33

2/7/20 12:28 PM CAN18538-00_p033.pgs 02.07.2020 12:30

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

- Deborah Cohan, MD, San Francisco, CA

Learn more at dignicap.com

PRO-20200213-01-EN

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

CAN521049.pgs 02.21.2020 15:44

ESA