Cancer Health Fall 2021

A SMART+STRONG PUBLICATION CANCERHEALTH.COM FALL 2021 $3.99

CAN’T STOP NOW

18 Years With Metastatic Breast Cancer

Immunotherapy Gets More Powerful

A Never Smoker’s Lung Cancer Stem Cell Transplants A Leukemia Diary Reviving Appetite

Terlisa Sheppard

FOR ADULTS WITH INTERMEDIATE OR HIGH-RISK MYELOFIBROSIS (MF)

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Your spleen size speaks volumes Spleen enlargement (splenomegaly) is a common finding in people with MF In people with MF, scar tissue builds up in the bone marrow, preventing it from making enough normal blood cells. When this happens, the spleen begins to make blood cells, and, as a result, the spleen may become larger.

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Symptoms of an enlarged spleen may include: • Abdominal discomfort • Pain under the left ribs • An early feeling of fullness when eating, even if you’ve only eaten a little food

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Increasing spleen size may be a sign of disease progression Because MF is a progressive condition, changes in your symptoms and/or spleen size could mean that your MF is changing, too. That’s why early identification of these changes is so important.

Your Healthcare Professional can help you keep track of your spleen size by feeling or “palpating” your spleen at every MF care visit. He or she may also order an imaging test to provide a more accurate measure of your spleen’s size.

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These tests may include: • Ultrasound • Computed tomography (CT) scan • Magnetic resonance imaging (MRI) Spleen image for illustrative purposes only.

Remember, early identification of any changes in your MF helps you and your Healthcare Professional have a more informed discussion.

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Wondering what size your spleen should be?

Get important facts about the spleen, including what happens when it becomes enlarged in people with MF.

Visit MFSpleenVideo.com to watch an educational video about spleen enlargement in MF.

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Download an informative guide about MF and the spleen at MFSpleenGuide.com.

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Jakafi® (ruxolitinib) has been shown to help reduce both spleen size and spleen-related symptoms in patients with MF Talk to your Healthcare Professional about how your spleen size may be changing and learn about Jakafi—the first prescription medicine approved by the FDA for adults with intermediate or high-risk MF. Visit JakafiForMF.com to learn more.

How your MF may respond to Jakafi depends on your specific circumstances.

Individual results may vary.

If you and your Healthcare Professional decide that Jakafi is right for you, learn about a patient support program, including financial assistance options for eligible* patients. Visit IncyteCARES.com to learn more.

IncyteCARES: Connecting to Access, Reimbursement, Education and Support *Terms and conditions apply.

IMPORTANT SAFETY INFORMATION Jakafi can cause serious side effects, including: Low blood counts: Jakafi® (ruxolitinib) may cause your platelet, red blood cell, or white blood cell counts to be lowered. If you develop bleeding, stop taking Jakafi and call your healthcare provider.

Your healthcare provider will perform blood tests to check your blood counts before you start Jakafi and regularly during your treatment. Your healthcare provider may change your dose of Jakafi or stop your treatment based on the results of your blood tests. Tell your healthcare provider right away if you develop or have worsening symptoms such as unusual bleeding, bruising, tiredness, shortness of breath, or a fever.

Infection: You may be at risk for developing a serious infection during treatment with Jakafi. Tell your healthcare provider if you develop any of the following symptoms of infection: chills, nausea, vomiting, aches, weakness, fever, painful skin rash or blisters.

Skin cancers: Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Tell your healthcare provider if you develop any new or changing skin lesions.

Increases in cholesterol: You may have changes in your blood cholesterol levels. Your healthcare provider will do blood tests to check your cholesterol levels during your treatment with Jakafi.

The most common side effects of Jakafi include: for certain types of MF and PV – low platelet or red blood cell counts, bruising, dizziness, headache, and

diarrhea; and for acute GVHD – low platelet, red or white blood cell counts, infections, and fluid retention.

These are not all the possible side effects of Jakafi.

Ask your pharmacist or healthcare provider for more information. Tell your healthcare provider about any side effect that bothers you or that does not go away.

Before taking Jakafi, tell your healthcare provider about: all the medications, vitamins, and herbal supplements you are taking and all your medical conditions, including if you have an infection, have or had tuberculosis (TB) or have been in close contact with someone who has TB, have or had hepatitis B, have or had liver or kidney problems, are on dialysis, have high cholesterol or triglycerides, had skin cancer, or have any other medical condition. Take Jakafi exactly as your healthcare provider tells you. Do not change your dose or stop taking Jakafi without first talking to your healthcare provider.

Women should not take Jakafi while pregnant or planning to become pregnant. Do not breastfeed during treatment with Jakafi and for 2 weeks after the final dose.

Please see Patient Brief Summary of Full Prescribing Information on the next page.

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.

You may also report side effects to Incyte Medical Information at 1-855-463-3463.

Jakafi and the Jakafi logo are registered trademarks of Incyte. © 2020, Incyte Corporation. MAT-JAK-02250 08/20

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Summary of Important Information About Jakafi® Please read this summary carefully and then talk with your healthcare provider about Jakafi (JAK-ah-fye).

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins and herbal supplements. Taking Jakafi with certain other medicines may affect how Jakafi works. Know the medicines you take. Keep a list of them to show your healthcare provider and pharmacist when you get a new medicine.

Infection. You may be at risk for developing a serious infection during treatment with Jakafi.

Tell your healthcare provider if you develop any of the following symptoms of infection:

How should I take Jakafi?

Skin cancers. Some people who take Jakafi have developed certain types of non-melanoma skin cancers. Tell your healthcare provider if you develop any new or changing skin lesions during treatment with Jakafi.

• Take Jakafi exactly as your healthcare provider tells you.

No advertisement can provide all the information • Do not change your dose or stop taking Jakafi needed to determine if a drug is right for you without first talking to your healthcare provider. or take the place of careful discussions with • You can take Jakafi with or without food. your healthcare provider. Only your healthcare • Jakafi may also be given through certain provider has the training to weigh the risks nasogastric tubes. and benefits of a prescription drug. ○ Tell your healthcare provider if you cannot What is Jakafi? take Jakafi by mouth. Your healthcare Jakafi is a prescription medicine used to treat: provider will decide if you can take Jakafi through a nasogastric tube.

• adults with certain types of myelofibrosis (MF).

• adults with polycythemia vera (PV) who have ○ Ask your healthcare provider to give you already taken a medicine called hydroxyurea specific instruction on how to properly and it did not work well enough or they could take Jakafi through a nasogastric tube. not tolerate it.

• If you miss a dose of Jakafi, take your next • adults and children 12 years of age and older dose at your regular time. Do not take 2 doses with acute graft-versus-host disease (GVHD) at the same time. who have taken corticosteroids and they did • If you take too much Jakafi call your healthcare not work well enough. provider or go to the nearest hospital emergency It is not known if Jakafi is safe or effective room right away. in children for treatment of myelofibrosis or • You will have regular blood tests during your polycythemia vera. treatment with Jakafi. Your healthcare provider may change your dose of Jakafi or stop your Before taking Jakafi, tell your treatment based on the results of your blood tests.

healthcare provider about all of your medical conditions, including if you:

• have an infection.

• have or had tuberculosis (TB), or have been in close contact with someone who has TB. • have or had hepatitis B. • have or have had liver problems.

• have or have had kidney problems or are on dialysis. If you are on dialysis, Jakafi should be taken after your dialysis.

• have high level of fat in your blood (high blood cholesterol or triglycerides).

• have had skin cancer in the past.

• are pregnant or plan to become pregnant.

It is not known if Jakafi will harm your unborn baby.

• are breastfeeding or plan to breastfeed. It is not known if Jakafi passes into your breast milk. Do not breastfeed during treatment with Jakafi and for 2 weeks after the final dose.

What are the possible side effects of Jakafi?

Jakafi can cause serious side effects including: Low blood cell counts. Jakafi may cause low platelet counts (thrombocytopenia), low red blood cell counts (anemia), and low white blood cell counts (neutropenia). If you develop bleeding, stop Jakafi and call your healthcare provider.

Your healthcare provider will do a blood test to check your blood cell counts before you start Jakafi and regularly during your treatment with Jakafi. Tell your healthcare provider right away if you develop or have worsening of any of these symptoms: • unusual bleeding • bruising • tiredness

• shortness of breath • fever

• chills • aches • fever • nausea

• vomiting • weakness • painful skin rash or blisters

Cholesterol increases. You may have changes in your blood cholesterol levels. Your healthcare provider will do blood tests to check your cholesterol levels during treatment with Jakafi.

The most common side effects of Jakafi in adults with certain types of MF and PV include: • low platelet counts (thrombocytopenia) • low red blood cell counts (anemia) • bruising • dizziness • headache • diarrhea The most common side effects of Jakafi in people with acute graft-versus-host disease (GVHD) include: • low red blood cell counts (anemia) • low platelet counts (thrombocytopenia) • low white blood cell counts (neutropenia) • infections • fluid retention These are not all the possible side effects of Jakafi.

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

You may also report side effects to Incyte Corporation at 1-855-463-3463.

The risk information provided here is not comprehensive. To learn more, talk about Jakafi with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at www.jakafi.com.

Manufactured for: Incyte Corporation, 1801 Augustine Cut-off, Wilmington, DE 19803 Revised: January 2020 PLR-JAK-00040 Jakafi is a registered trademark of Incyte.

All rights reserved.

U.S. Patent Nos. 7598257; 8415362; 8722693; 8822481; 8829013; 9079912; 9814722; 10016429 © 2011-2020 Incyte Corporation.

All rights reserved.

For more information call 1-855-463-3463 or go to www.jakafi.com.

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CONTENTS

E xclusively on

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

Love for her daughters sustains Terlisa Sheppard.

Basics

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

Science News

COVER AND THIS PAGE: (SHEPPARD) JENSEN LARSON; (HEART SPEECH BUBBLE, IV TREATMENT) ISTOCK

Learn about the latest treatment advances, cure research and conference news. cancerhealth.com/science-news

Cancer Health Digital Scan the QR code (left) with your smartphone to check out the digital issue of Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.

16 NO STOPPING Terlisa Sheppard, 54, has lived with metastatic breast cancer for 18 years. She’s not slowing down now.

BY KATE FERGUSON 22 HOW DOES THE IMMUNE SYSTEM FIGHT CANCER? Cancer has ways to avoid the body’s defenses, but immunotherapy can help the immune system do a better job. BY LIZ HIGHLEYMAN 4 From the Editor Helping Hands 6 Care & Treatment COVID-19 vaccine response in people with cancer | don’t delay lung cancer surgery | immunotherapy for early breast cancer | first KRAS drug | drug approvals 8 News Social media traps | military edge for colorectal cancer survival | falling cancer death rates | fighting for patient-centered research 10 Voices Patricia Hom, MD, MPH, an AsianAmerican never smoker with lung cancer, on finding her new purpose 12 Basics How stem cell transplants work

14 A Leukemia Diary Brian Koffman, MD, founder of the CLL Society, on his own journey 26 Life With Cancer For Warring Khushwinder, Sikh meditation reinforces medication.

28 Good Stuff Healthier skin, comfy bras, sleep help, nausea relief and more 30 Resources Prostate cancer 31 Your Team Treating blood cancers 32 Solutions Reviving appetite 33 Reader Survey Cancer in women

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FROM THE EDITOR

Cancer Health TM

Helping Hands

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dealing with, there is help. Find the best prostate cancer websites in Resources (page 30), soothing products in Good Stuff (page 28) and ways to revive a flagging appetite in Solutions (page 32). Women readers, please help us better serve you by completing the Survey (page 33).

Sometimes, helping hands come from a higher power. In Life With Cancer (page 26), Warring Khushwinder, a devout Sikh, describes how modern pain medications helped him cope with post-cancer chronic pain, but it was his meditative faith that led him back to living well.

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

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

Cancer Health (ISSN 2688-6200) Issue No. 15. Copyright © 2021 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.

(BARNETT) MICHAEL HALLIDAY; (ILLUSTRATION) ISTOCK

A CANCER DIAGNOSIS CAN be lonely. But you may find more helping hands out there than you ever imagined.

Terlisa Sheppard, the subject of our cover story (page 16), who has lived with metastatic cancer for more than 18 years, found that her closeknit but far-flung family rallied around her and that her love for her daughters gave her courage. Years later, her boundless generosity toward other people with cancer earned her the nickname “Mother Terlisa.”

Patricia Hom, MD, MPH, an AsianAmerican woman with lung cancer who never smoked, credits two seasoned lung cancer patient advocates with helping her emerge from her “sad cancer patient” phase (Voices, page 10). “Connections” (page 8) tells the story of two women with metastatic breast cancer who fight for patient-centered research. In “A Leukemia Diary” (page 14), Brian Koffman, MD, used his family-doctor skills to discover cutting-edge treatments for his chronic lymphocytic leukemia (CLL) and then founded the CLL Society to help others.

Your cancer care team has new ways to help too. Once-untreatable cancers are yielding to new therapies as scientists deepen their understanding of immune-based approaches (“How Does the Immune System Fight Cancer?” page 22). Get more treatment information in Care & Treatment (page 6), Basics (page 12) and Your Team (page 31).

Whatever kind of cancer you are

EDITOR-IN-CHIEF Bob Barnett MANAGING EDITOR Jennifer Morton SCIENCE EDITOR Liz Highleyman SENIOR EDITOR Kate Ferguson DEPUTY EDITOR Trent Straube SCIENCE WRITERS Sukanya Charuchandra, Caroline Tien COPY CHIEF Joe Mejía ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; Timothy Henrich, MD; Carl June, MD; Gaby Kressly; Leigh Leibel, MSc; Yung Lie, PhD; Gilberto Lopes, MD; Jennifer L. McQuade, MD; Amelie Ramirez, DPH; Hope Rugo, MD; Kelly Shanahan, MD; Carla Tardif FEEDBACK Email: info@cancerhealth.com

ONCOLOGY FU ND PO RTFO LIO

When health insurance is not enough, HealthWell fills the gap.

The HealthWell Foundation is a nationally recognized, independent non-profit organization, that serves as a safety net for underinsured Americans. Since 2003, we have awarded over $2.1 billion in medication copay and insurance premium assistance grants to more than 615,000 patients with chronic or life-altering diseases.

Our vision is to ensure that no patient goes without health care because they cannot afford it. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses for essential treatments and medications.

Are you living with cancer and need assistance with copayment or premium costs? HealthWell may be able to help. To learn more about our program and the oncology funds we cover, visit our Disease Funds page at https://bit.ly/2V7kJJ2.

www.HealthWellFoundation.org/disease-funds Website: www.HealthWellFoundation.org Facebook: Facebook.com/healthwellfoundation Instagram: @HealthWellFoundation Twitter: @HealthWellOrg Linkedin: healthwell-foundation

Acute Myeloid Leukemia B-Cell Lymphoma – Medicare Access Bladder and Urothelial Cancer – Medicare Access Bone Metastases – Medicare Access Breast Cancer – Medicare Access Cancer-Related Behavioral Health (Accepting phone applications only) Carcinoid Tumors and Associated Symptoms – Medicare Access Chemotherapy Induced Nausea or Vomiting – Medicare Access Chemotherapy Induced Neutropenia – Medicare Access Chronic Lymphocytic Leukemia Chronic Myeloid Leukemia – Medicare Access Colorectal Carcinoma – Medicare Access Cutaneous T-Cell Lymphoma Gastric Cancer – Medicare Access Glioblastoma Multiforme/Anaplastic Astrocytoma Head and Neck Cancer – Medicare Access Hepatocellular Carcinoma – Medicare Access Hodgkin’s Lymphoma Mantle Cell Lymphoma Melanoma – Medicare Access Multiple Myeloma – Medicare Access Myelodysplastic Syndromes – Medicare Access Non-Hodgkin’s Lymphoma – Medicare Access Non-Small Cell Lung Cancer Ovarian Cancer – Medicare Access Pancreatic Cancer – Medicare Access Prostate Cancer – Medicare Access Renal Cell Carcinoma – Medicare Access Small Cell Lung Cancer – Medicare Access Wilms’ Tumor

“I wanted to say thank you so much to the HealthWell Foundation for helping out with the funding of my medication. I have CLL and it was starting to cut off my trachea and esophagus making it difficult to breathe and eat. Medication was prescribed but is not affordable. Because of the medication you help provide, I won’t have to worry about CLL shutting my throat and leaving me feeling claustrophobic. Thank you, thank you!”

John – Haw River, NC (HealthWell CLL Fund grant recipient)

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CARE & TREATMENT

BY LIZ HIGHLEYMAN

COVID-19 VACCINE RESPONSE others use BTK inhibitors that impair B-cell function.

CAR-T therapy and stem cell transplants can wipe out all types of immune cells.

Antibody levels don’t tell the whole story, however. COVID-19 vaccines also trigger memory B-cell and T-cell responses. One study found that 77% of blood cancer patients who came down with COVID-19 showed SARS-CoV-2–specific T-cell responses, and those with higher CD8 T-cell counts were more likely to survive—including those treated with anti-CD20 drugs.

It’s important for cancer patients to receive their second dose of the mRNA vaccines (there’s less research on the single-shot J&J vaccine). But three doses might be even better. Researchers are exploring whether immunocompromised people could benefit from an extra booster—an approach that has helped organ transplant recipients.

People at risk for inadequate vaccine response should take other precautions. “We encourage blood cancer patients to take every measure to protect themselves from COVID-19 by getting vaccinated and continuing to take preventative precautions,” says LLS chief medical officer Gwen Nichols, MD. And when others get vaccinated, she adds, they are not only protecting themselves but are helping to protect these patients.

Don’t Delay Lung Cancer Surgery Putting off lung cancer surgery for more than three months can increase the likelihood of recurrence and shorten survival— an important consideration, as many surgeries have been put on hold due to COVID-19.

Varun Puri, MD, of the Washington University School of Medicine, and colleagues looked at 9,904 people receiving care through the Veterans

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Health Administration who were diagnosed with Stage I non-small-cell lung cancer and underwent surgery between 2006 and 2016. The average time between diagnosis and surgery was 70 days.

Black people and those in low income areas had longer delays.

Over six years

of follow-up, 42% experienced recurrence. Beyond a 12-week window after diagnosis, the risk of relapse rose by 0.4% with each extra week. What’s more, patients who received surgery within the first 12 weeks lived 7.5 months longer than those who waited.

—Sukanya Charuchandra

ALL IMAGES: ISTOCK (MODEL USED FOR ILLUSTRATIVE PURPOSES ONLY)

First, the good news: COVID-19 vaccines are safe for people with cancer. And most patients with solid tumors will have a good antibody response.

But those with blood cancers may not fare as well.

Researchers in New York City measured antibodies against SARS-CoV-2 (the virus that causes COVID-19) in 200 fully vaccinated cancer patients, most of whom had received the Pfizer-BioNTech or Moderna mRNA vaccines. Among people with solid tumors, 98% developed antibodies, with levels similar to those seen in people without cancer. Two other studies saw response rates of 90% and 94% for cancer patients overall. But people with blood cancers were less likely to respond, and their antibody levels were lower.

The specific type of blood cancer matters, according to an analysis of 1,445 patients by the Leukemia & Lymphoma Society (LLS). Antibody response rates after the second mRNA vaccine dose ranged from 100% for hairy cell leukemia to just 44% for mantle cell lymphoma. People with Hodgkin lymphoma (98%), chronic myeloid leukemia (97%) and multiple myeloma (95%) had high response rates, but only 64% of those with chronic lymphocytic leukemia produced antibodies.

The type of cancer treatment is key to vaccine response. Some people with leukemia and lymphoma receive monoclonal antibodies that target the CD20 receptor on antibody-producing B cells;

Immunotherapy for Early Breast Cancer The Food and Drug Administration recently approved the checkpoint inhibitor Keytruda (pembrolizumab) for people with newly diagnosed triple-negative breast cancer (TNBC) who are at high risk for recurrence.

The Phase III Keynote-522 trial included 1,174 participants with previously untreated Stage II or III (nonmetastatic) TNBC that was operable but likely to relapse. Before undergoing surgery, they were randomly assigned to receive Keytruda or a placebo every three weeks for six months along with two different chemotherapy regimens. After surgery, they continued to receive Keytruda or the placebo alone.

Nearly two thirds (63%) of people treated with Keytruda plus chemotherapy before surgery had a pathological complete response—meaning no

evidence of remaining cancer in their breast tissue or lymph nodes—compared with 56% in the placebo group. Over three years, those who used Keytruda were 37% less likely to experience disease progression that precludes surgery, local or distant recurrence, a second primary cancer or death from any cause.

The approval “has the potential to change the treatment paradigm by now including an immunotherapy as part of the regimen for patients with highrisk early-stage TNBC,” says Joyce O’Shaughnessy, MD, of Baylor University Medical Center.

First KRAS Drug Now Available After three decades of frustration, the Food and Drug Administration has finally approved the first KRAS inhibitor. Lumakras (sotorasib) was granted accelerated approval for the treatment of advanced non-small-cell lung cancer (NSCLC), but the new targeted therapy shows promise for other cancers as well.

The KRAS gene makes proteins that regulate cell growth. Once considered “undruggable,” KRAS is the most commonly altered gene in people with cancer. Sotorasib targets a specific mutation, known as KRAS G12C, found in about 13% of NSCLC tumors.

The CodeBreaK 100 trial tested once-daily Lumakras pills in people with lung cancer and several other solid tumors. Among 124 previously treated people with locally advanced or metastatic NSCLC, 37% saw their tumors shrink, including four with complete remission; another 44% had stable disease without further progression. The median duration of response was 11.1 months, and the median overall survival was 12.5 months.

The approval highlights the importance of tumor genomic testing to determine who might benefit from Lumakras. “Biomarker testing for patients with non-small-cell lung cancer is critical because it informs a patient’s treatment path with a personalized and tailored approach,” says LUNGevity president and CEO Andrea Ferris.

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

Now Approved Here are the latest new cancer drugs approved by the Food and Drug Administration: • Lumakras (sotorasib) for non-small-cell lung cancer with KRAS G12C mutation • Rybrevant (amivantamab) for non-small-cell lung cancer with EGFR exon 20 mutation • Rylaze (asparaginase erwinia chrysanthemi) for acute lymphoblastic leukemia and lymphoblastic lymphoma • Truseltiq (infigratinib) for cholangiocarcinoma

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CancerHealth 7

NEWS

BY BOB BARNETT

When Christine Hodgdon, 41, and Julia Maués, 38, both living with Stage IV metastatic breast cancer, met in 2018, “We just knew we’d be good friends,” says Hodgdon. Adds Maués, “There’s an instant connection with someone dealing with the same difficult diagnosis, a bond. You don’t have to explain the nuances.”

Hodgdon was diagnosed in 2015; her cancer had spread to her lungs. “I thought I would follow a course of chemo, it wouldn’t work and I would die,” she recalls. But she started responding to treatment. She had surgery, chemo, hormone therapy, radiation, “a year of hell.” She did yoga and meditated. Then this self-described type A personality jumped into patient advocacy.

Maués was 29 in 2013 and 25 weeks pregnant at her diagnosis.

Her cancer had spread to her bones, liver and brain. She finished the first course of chemo three weeks before her son was born—at term. But the chemo damaged her heart and led to neuropathy so severe she had a hard time holding her baby.

For the brain metastasis, she had radiation and, later, brain surgery. “Eventually, I started doing better, the cancer started shrinking and my heart started recovering,” recalls Maués. By 2018, she, too, was ready to fight for fellow patients.

Hodgdon and Maués roomed together at the San Antonio Breast Cancer Symposium

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(SABCS) in 2018.

Christine Hodgdon In 2019, at the (left) and American Society Julia Maués of Clinical Oncol(right) ogy (ASCO) annual meeting, they connected with Corrie Painter, PhD, a cancer survivor who is associate director of the patient-driven cancer research program Count Me In at the Broad Institute of MIT and Harvard. Hodgdon invited Painter to tag along to the poster sessions, where researchers stand in front of displays of their abstracts and answer questions. “It was amazing,” recalls Hodgdon. “I was teaching Corrie about my cancer, and she was explaining things to me. I thought, Why don’t we do this at every conference?”

That’s how Guiding Researchers and Advocates to Scientific Partnerships (GRASP) was born.

Later that year, at SABCS 2019, the group launched a pilot program to accommodate about 12 patients. The concept was to assemble small groups, run by

an experienced patient advocate mentor, of three or four patient advocates, a scientist and, if available, the poster author. The goal was a two-way conversation that would help people with cancer understand the research and school researchers in the lived experience of people with cancer.

Demand was so great that they wound up with over 100 people.

“We wanted to shift the power dynamic so patients could appreciate their expertise as the ones living with the disease,” says Hodgdon. The mentor’s role is to “make sure the scientist is explaining things clearly and not using a lot of jargon and to make sure the patient advocates share their stories and ask questions.”

GRASP (graspcancer.org) went virtual during the pandemic.

It hosted “poster walk-throughs” at the Metastatic Breast Cancer Research Conference in Salt Lake City last September and will run more at the Metastatic Research Society’s annual conference in November, SABCS in December and ASCO in June 2022.

Says Maués, “Patient advocates make research better.”

(HODGDON) COURTESY OF CHRISTINE HODGDON; (MAUÉS) COURTESY OF JULIA MAUÉS

CONNECTIONS

Social Media Traps Looking for cancer treatment info on Facebook, Twitter, Reddit or other social media sites?

Nearly one in three of the articles you’ll find contain misinformation that’s often harmful, finds a study by the University of Utah’s Huntsman Cancer Institute published in the Journal of the National Cancer Institute.

Researchers asked experts from the National Comprehensive Cancer Network, which develops evidence-based professional guidelines for cancer

care, to evaluate 200 popular cancer-related articles on social media sites.

Misinformation, such as the misuse of evidence or the use of misleading titles, characterized 32.5% of the articles. More concerning: 30.5% contained possibly harmful information, such as encouraging people with cancer to delay potentially curative care, use unproven (and often expensive) therapies and self-medicate with toxic compounds. The harmful articles

BOTH IMAGES: ISTOCK

MILITARY EDGE Active-duty members of the U.S. military, retirees, National Guard members and family members have free or low-cost health care provided by the U.S. Military Health System. If they are diagnosed with colorectal cancer, they have an 18% lower risk of death than civilians, report researchers in Cancer Epidemiology, Biomarkers & Prevention. The survival benefit is greater for Black patients, who typically have poorer colon cancer survival rates than white Americans. They are 26% less likely to die than civilians.

The study adds to a growing body of research showing that access to health care substantially improves cancer outcomes and can help bridge racial disparities. In an unrelated study presented at the American Society of Clinical Oncology 2021 Annual Meeting, researchers Get more cancer news: cancerhealth.com/news

found that in states that chose not to expand access to Medicaid under the Affordable Care Act, cancer mortality was higher.

For example, women diagnosed with early-stage breast cancer in states that limit access to Medicaid were 31% more likely to die.

In the military study, lead author Craig D. Shriver, MD, director of the Murtha Cancer Center Research Program at Uniformed Services University of the Health Sciences in Bethesda, Maryland, stated, “Our findings provide solid evidence of the benefits of access to universal health care.

What’s more, when medical care is universally provided to all patients, racial disparity in colon cancer outcomes can be reduced.”

were more likely to be shared than more accurate ones.

Looking for reliable info?

The American Cancer Society (cancer.org), itself a good source, recommends the American Society of Clinical Oncology (cancer.net), CancerWise (mdanderson.org/cancerwise), Medline Plus (nlm.nih.gov/med lineplus/cancers.html), National Cancer Institute (cancer.gov), National Comprehensive Cancer Network (nccn.org) and Oncolink (oncolink.org).

LIVING LONGER Death rates for most cancers— especially lung cancer and melanoma—continue to decline among men and women of all racial and ethnic groups in the United States, according to the latest Annual Report to the Nation on the Status of Cancer, published in The Journal of the National Cancer Institute.

However, death rates for colorectal and female breast cancer declined at a slower rate than in previous years, and death rates for prostate cancer leveled off. Death rates for some cancers, including those of the brain and pancreas, actually increased. The study looked at the years 2001 to 2018, so it does not include data related to the COVID-19 pandemic.

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CancerHealth 9

BY PATRICIA HOM, MD, MPH

Purpose

Patricia Hom, MD, MPH, 39, who trained as an ob-gyn, lives in San Francisco. She has Stage IV metastatic non-small-cell lung cancer.

“ADENOCARCINOMA OF THE lung, bronchogenic type.”

My life stopped the second I got this diagnosis, a subtype of Stage IV metastatic non-smallcell lung cancer (NSCLC). It was July 3, 2017. I was 35 years old, had never smoked and had no family history of any cancer.

Lung cancer? Seriously?

Three days earlier, I had graduated from my ob-gyn residency.

My life has always been nontraditional. I had two boys, both unplanned, as a teenager. When I got pregnant the first time, at 17, most people told me I was ruining my life by having my

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baby. My parents had emigrated from mainland China before I was born—I am American—yet Chinese extended family members in Asia were calling to lecture me without even telling me who they were.

I commuted to UC Berkeley as an undergraduate with my two babies in the back seat. I used my determination to fuel my goal of becoming an ob-gyn to serve young women like me. It was a struggle getting through a rigorous medical school education at UCSF and an even more challenging residency training at Harbor–UCLA Medical Center.

Along the way, my relationship with the father of my children failed, and I had to separate from my two boys for four years when my residency match took me far away. I regretted missing a crucial part of their childhood, but I knew I would be able to serve my purpose once all was said and done.

I was finally on my way to trailblaze and change the world by working with teen moms and underserved communities. But my last year of residency, I had a cough that wouldn’t go away. I shrugged it off, thinking I had to put my work and patients first.

The day I was diagnosed, I thought back to my first year in medical school in 2009. In the oncology block, I learned that lung cancer was the leading cause of cancer death in the United States, and it had a clear cause: smoking tobacco. I had never smoked. Check! I was low risk. Whew!

But after a few slides, my professor noted that there was a subset of nonsmoking women in Japan who were dying of a specific type of NSCLC. Given that they were nonsmokers, they were often diagnosed at a late stage, making them ineligible for early intervention, such as surgery, which, if done early, could be, in some cases, curative.

The thought occurred to me: There is an “Asian lady lung cancer” correlated with being a never smoker, and there is no treatment other than chemo and radiation. I was moderately startled but steeled myself to dismiss it, although not before I

BOTH IMAGES: COURTESY OF PATRICIA HOM, MD, MPH

VOICES

filed it in the Graduation day, UCSF back of my mind.

School of It won’t happen Medicine, to me, I told 2012, being hooded by myself. her mom and Now it had. I her two sons became very ill, to the point that I felt near death and had to give up my yet-tostart new job. I was never physically able to practice outside of residency. Instead, I gave in to the sad cancer patient story.

I could no longer support myself and relied on the generosity of friends, family and even people I did not know. My mind became foggy, as the cancer had progressed to my brain. To my bones. To my lymph nodes.

I could not think, speak or write as clearly as I could before.

Three years into my diagnosis, with the help of two seasoned lung cancer patients, I started to wake up and look more closely at my life. I remembered the old me—brave, strong and determined. In rebuilding myself, I joined the Asian American Research Center on Health at UCSF and met Scarlett Lin Gomez, MPH, PhD, a champion epidemiologist whose research has revealed countless health disparities. I am now a research associate for her FANS (Female Asian American Never Smoker) lung cancer study.

So do I count as one of the Asian lady lung cancer cases that I had learned about in lecture way back when? Yes and no.

That type, EGFR-mutation-driven lung cancer, characterizes Japanese never-smoking females in For more first-person stories: cancerhealth.com/stories

I AM A FEMALE ASIANAMERICAN NEVER SMOKER. Japan. It turns out that there are also many other driver mutations causing lung cancer in Asian-American women who never smoked.

Did you know that 57% of Asian-American women and 80% of Chinese-American women who are diagnosed with lung cancer are never smokers?

There are also distinct differences between never-smoking Asian females abroad and those born in America. I belong to a lung cancer group different from EGFR, namely ALK-positive gene rearrangement. I have a handful of Asian lady moms who are all ALK positive.

The truth is, there are minimal data on this important health care issue. FANS is looking at possible risk factors and exposures that are distinct to lung

cancer patients in the AsianAmerican population. We are literally dying to find out why Asian-American women who never smoked tobacco are being disproportionately diagnosed with lung cancer! The FANS study, with me on board, is on it.

So where am I now? Just as I have fought tooth and nail for everything I worked for in my life, I have done the same with my cancer. I survived four years.

I saw my boys graduate from high school and go to college.

I intend to care for teen moms from high-need communities more holistically in the future. I had cultivated a whole career in which I could provide group prenatal care for pregnant teen/ young adult women and teach them mindful parenting skills. I devised my own version of a mindful teen pregnancy program when I attended graduate school between medical school and residency. It enables young pregnant women to develop tools for embracing all experiences—especially those where individuals have little control—as well as for all of the impending parenting to come in a social support group setting. The goal is to break the intergenerational cycle of poor outcomes that result from the ingrained socioeconomic and health care disparities in the United States.

Now, I am not only surviving but living fully in the face of cancer. Cancer has made me stop, slow down and reflect. I am reclaiming my purpose, tweaking it, so I can be fully myself. Again. ■

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BASICS

BY LIZ HIGHLEYMAN

Stem Cell Transplants The procedure can put certain blood cancers into remission and may lead to a cure.

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donor is a close genetic match, preferably a sibling. A compatible donor may also be found through a registry.

Stem cells may be obtained from bone marrow withdrawn from the hip bone, harvested from the blood (using drugs that move the cells from the bone marrow into the bloodstream) or collected from umbilical cord blood from newborns.

RISKS OF STEM CELL TRANSPLANTS After conditioning therapy, the new stem cells are administered via IV infusion. These cells migrate to the bone marrow—a process known as engraftment—where they produce new blood cells and reconstitute the immune system. It can take several months for blood cell counts to return to normal.

A stem cell transplant is an intensive medical procedure.

The conditioning therapy kills off the recipient’s protective immune cells, leaving them prone to infections. Patients

may need transfusions of red blood cells and platelets until the new stem cells can produce enough on their own. The conditioning regimen can also cause other side effects, including nausea and vomiting, hair loss and mouth sores; the procedure may also lead to infertility.

One potentially serious complication of an allogeneic transplant is graft-versus-host disease (GVHD), which occurs when the new immune cells produced by donor stem cells recognize the recipient’s body as “foreign” and attack healthy tissues. Steroids, other immunosuppressive medications and certain targeted therapies can be used to prevent and manage GVHD. ■

Healthy people can become stem cell donors, and donors from minority groups are especially needed. The procedure is generally safe for the donor and could save someone’s life. To learn more, visit Be the Match (BetheMatch.org) or call 800-MARROW-2.

To read more Basics: cancerhealth/basics

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A STEM CELL TRANSPLANT, commonly known as a bone marrow transplant, replaces blood-forming stem cells. The procedure can be a lifesaving option for people with certain blood cancers that don’t respond to other types of treatment. A successful transplant can put cancer into remission and may lead to a cure.

Hematopoietic stem cells are precursor cells that give rise to all the cells that make up the blood, including oxygen-carrying red blood cells, platelets and immune system white blood cells. This process occurs in the bone marrow, the spongy tissue inside certain bones.

The transplant procedure usually involves strong chemotherapy and sometimes total body radiation—known as conditioning therapy—that wipes out existing stem cells and blood cells and makes room for healthy new ones.

In some cases, a patient’s healthy stem cells are collected before conditioning therapy, frozen and returned to the body afterward; this is known as an autologous transplant. In other cases, the stem cells come from a donor; this is called an allogeneic transplant. Donor stem cells often produce white blood cells that can fight cancer better than the recipient’s original immune cells. The likelihood of complications is lower if the

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DIARY

AS TOLD TO BOB BARNETT

A Leukemia Diary

Brian Koffman, a family physician when diagnosed with chronic lymphocytic leukemia, cofounded the CLL Society.

He lives in Claremont, California.

September 2005 We were living in Newport Beach, California. We had four young adult children—two boys and two girls—and the last were off to college. I was 54, a family doctor.

I noticed some lumps at the back of my neck, but I thought they were cysts. They didn’t go away.

Months later, I ordered some blood work on myself.

As the saying goes, the doctor who treats himself has a fool for a patient.

My white blood cell count was too high. Next thing I knew, I was seeing a hematologist and getting a fancier test called a flow cytometry, an immunological fingerprint of the cells. I had chronic lymphocytic leukemia, or CLL. October 2005 My oldest daughter was getting married in October.

We decided not to tell anyone until after the wedding was over. It was a lovely wedding, but it was a very difficult time for me and Patricia because everyone was in a celebratory mood. I had gotten some prognostics back that suggested I had a really bad variety of CLL and a short time to live.

Winter/Spring/Summer 2006 I began to find experts who were doing cuttingedge research on CLL. I had a form of CLL that was very likely to be nonresponsive to chemotherapy. I tried traditional Chinese medicine. I tried acupuncture. I changed my diet to vegan, which I’ve stayed with ever since. I was exercising, meditating, trying to reduce stress in my life.

September 2006 I noticed some little red dots on my legs. Blood tests showed that my platelets, which prevent bleeding and bruising and should have been over

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150,000, were dangerously low, at From left: Brian Koffman today; with 9,000. The red dots were his wife, Patricia a sign of bleeding under Koffman, near Catalina the skin. I called my heIsland, 2018; and hiking in California matologist, and within a couple of hours, I was in the hospital receiving emergency treatment. I had developed a rare autoimmune complication of CLL— immune thrombocytopenic purpura (ITP)— which was attacking my own platelets and causing internal bleeding. Over the next year and a half, I was in the hospital five times.

February 2007 I had an emergency splenectomy (removal of the spleen) to see if it would raise my platelet levels. My belly was black and blue from internal bleeding, and my lymph nodes were growing from CLL. Over the year, I got various treatments for ITP, but finally, a monoclonal antibody plus an immunosuppressive drug started to work. Unexpectedly, these drugs also worked well against my CLL. April 2008 I decided to go for a stem cell (bone marrow) transplant. It’s usually a last resort, but I had nearly died a few times. It was extremely unlikely that chemotherapy would work for me. So why not go for a transplant?

Meanwhile, I had to let everyone know, so I was busy writing emails, but my kids said to me, “Dad, that’s so old-fashioned.” At their suggestion, I started a blog to tell my story and to report CLL news in a patient-friendly format.

July 2008 I had my stem cell transplant on July 1. Unfortu-

because there are things that one CLL patient can tell another CLL patient that you can never get from a doctor.

nately, it didn’t work. I never engrafted. Within a few months, my ITP was back, and my CLL was back. Luckily, when I went back on the old meds, I gained some control over the ITP and CLL again.

2010 In January, my platelets and other counts were good, but I still had palpable nodes from my CLL. My blog had more than 100,000 visits since 2008.

(PAPER) ISTOCK; (ALL OTHERS) COURTESY OF BRIAN KOFFMAN, MD

2011 In May 2011, my CLL was back and aggressive.

I was hearing a buzz about new compounds that were coming—oral targeted therapies. CLL is addicted to a signaling pathway, and they found ways to knock out that signal downstream. I took the very first drug that was successful in doing that. In December, I talked to one of the top CLL researchers about his trial, and he said, “Yeah, we’ll pencil you in.”

January 2012 My wife and I moved to Columbus, Ohio, for January, February and March to start on my clinical trial. I remember two days after starting the trial drug, I was washing my neck and under my armpits and thinking, Is it possible the lymph nodes are shrinking already? Soon, they were gone and stayed gone for years.

2015 I wanted to teach people so you didn’t have to be an MD or attend conferences to benefit from the latest therapies. With my wife, I started CLLSociety.org, which was the birth of the nonprofit CLL Society. The other major aspect was support, For the full version of this story: cancerhealth.com/Koffman

2017 I developed a rare mutation in my CLL: My cancer cells learned how to turn the pathway back on that the drug had blocked. I slowly started to relapse.

Time for another option. I went with CAR-T—chimeric antigen receptor T-cell therapy, a living drug. It was experimental; it’s still not approved for CLL. But my CLL tended to be difficult to treat and recurrent, so I was giving it the biggest kick I could.

March 2018 My wife and I flew to Seattle, to the Seattle Cancer Care Alliance. I was the 36th patient in the trial. It was a difficult time for me. I had night sweats, fevers and terrible pains. I had two hospitalizations.

I was hallucinating. It was hardest on my wife.

She’s watching this and wondering, Is he ever going to go back to normal? Is he ever going to talk again? To walk again?

But I fully recovered, and when they restaged me a month later, I had no evidence of cancer in my blood or bone marrow. All my lymph nodes had shrunk back, essentially, to normal.

We were just ecstatic. It was an incredibly wonderful time, and I do want to emphasize that if it hadn’t been for Patty, it wouldn’t have been possible. I mean, she just stood by me.

2021 I’m an early adopter. I was willing to take risks, and my timing was great. I am now 70. I am no longer on any active treatment for CLL, but I remain immunocompromised.

I walk every day. In the summer, I swim every day. I see my children and grandchildren. I cook and bake. I’m writing all the time. Before the pandemic, I traveled hundreds of thousands of miles a year. I love art and museums. I’m Canadian, and the last big trip we did just before COVID-19 was canoeing in a Canadian national park. As much as I love being in nature or seeing the world, what I am really hoping for is to be safely with my family and friends again.

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Terlisa Sheppard, age 54, is an 18-year survivor of metastatic breast cancer.

BY KATE FERGUSON

FULLY SIX MONTHS INTO HER SECOND pregnancy, in November 1998, Terlisa Sheppard felt a lump under her arm. Her doctor suggested that her milk ducts might be clogged. To allay any concerns the 31-year-old might have, he promised to order a mammogram right away and another after she gave birth. Sheppard’s regular checkups had been stellar, so she wasn’t really worried. “But we never got to the second mammogram,” she says.

“My breast surgeon did the biopsy. I had Stage III breast cancer.”

As Sheppard wondered what could have caused her cancer, she also worried about how it would affect her 2-year-old daughter, Alexis, and her precious baby-to-be.

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Three years prior, Sheppard, an accountant for the Department of Defense, had relocated to scenic Orlando from Maryland. “I loved being around water,” she says. “That’s not so hard here because there’s water everywhere.”

Doctors told her that her cancer was “very aggressive and the pregnancy was feeding it like wildfire,” she says. “They recommended I deliver the baby six weeks early and start treatment right away.”

Sheppard began four cycles of a chemotherapy drug combination commonly used to treat localized breast cancer. This was followed by four cycles of an alkaloid medicine to shrink the tumors as much as possible prior to a combination surgery to remove and reconstruct her breast.

“It was July 1999, and the surgery went well,” Sheppard says. “Then I was back at work and doing radiation at the cancer center during my lunch break.”

But life would soon snatch away the job Sheppard so loved, and she’d be beset by pain and uncertainty about whether her girls would be left motherless. Her health problems were only just beginning.

PROBLEMS, PROBLEMS In the spring of 2001, Sheppard experienced back pain. Her doctor diagnosed a bladder infection and prescribed a course of antibiotics, which Sheppard completed. But her pain persisted. “I wasn’t due to see my medical oncologist until that December,” she says. “Then it just dawned on me that the cancer had come back.”

Sheppard called her oncologist, who told her to come in for some scans. Accompanied by her mother, husband, sister and brother-in-law, she received the test results in the doctor’s office.

One of 10 siblings in a close-knit family, Sheppard knew her loving support group would spring into action. “Every time I would go to the doctor, I had family members either flying or driving to Orlando to be with me,” she says.

This time, Sheppard “I kind of refer to learned she had Stage IV myself as a tough metastatic breast cancer cookie,” says Terlisa Sheppard.

(MBC). In tears, her on-

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From top left: Sheppard’s daughters Alyah and Alexis, at age 3 and 5, respectively; Sheppard with her siblings; and with her grown-up baby girl, Alyah

helped out with my daughters,” she says. “Even though I was so weak that I couldn’t go out, it gave me life to look outside, see my daughters thriving and my family being there supporting me.”

Sheppard developed cancer lesions that caused pain in her abdomen and spine, for which she received radiation treatment. “Then, just a year later, in August 2003, I was diagnosed with brain metastasis,” she says. “At that point in my life, this didn’t beat me down like some people would have imagined. Again, I thought about my daughters and was determined not to give in, so I gave it my all.”

Doctors advised Sheppard that she needed stereotactic radiosurgery, a minimally invasive operation, right away.

“My mom, oldest sisters and a brother—who had been working out of the country and flew in—assembled for a nine-hour procedure,” she says. “It was very taxing on my family—probably more so than on me because I had been going through all of these different diagnoses and cycles of treatment. I kept trying to hold it together for them.”

That year, Sheppard lost at least 50 pounds. She needed a blood transfusion. “I wasn’t eating normally, so I started juicing, and that really helped bring my appetite back to where it needed to be,” she says.

Sheppard also enjoyed backup from her former coworkers and neighbors who dropped off bags of groceries and juicing supplies. Their assistance crystallized the importance of community support for cancer survivors.

During the next few years, as Sheppard watched her daughters grow into adolescence, the routine treatments

PREVIOUS PAGES: (SHEPPARD) JENSEN LARSON; THIS PAGE: (SHEPPARD AND ALYAH) JENSEN LARSON; OTHERS: COURTESY OF TERLISA SHEPPARD

cologist called it “terminal cancer,” held her hand and told her to go home and get her affairs in order.

“The cancer had metastasized to my bones, lungs and liver. We were shocked,” Sheppard says. “I tried to hold it together for my family. But as I looked around the room, I saw they were trying to hold it together for me.”

At this point, Sheppard was about 15 years into her career with the federal government and requested early retirement.

“My sisters came to get things out of my office,” she says. “In my mind, I knew I wasn’t going to give in; I was getting ready to start fighting this thing. Whatever it was that I needed to do, I was going to do it!”

Once again, Sheppard thought about her kids. Her youngest, Alyah, was 3 years old, and Alexis was 5. To them, nothing was amiss. Even with a shaved head, Mommy was still the same positive, bubbly, high-energy force at the center of their world.

The two girls would excitedly accompany her to treatment at the cancer center. They especially looked forward to Thursday tea time, when the staff served desserts along with freshly brewed teas in teacups donated from all over the world.

Sheppard started a scrapbook chronicling her ordeal so that her daughters could learn about her cancer journey directly from her.

In January 2002, she developed a blood clot in her lung that landed her in the hospital for an entire week. Her oldest daughter visited and stayed overnight. “I remember her crawling up in the bed alongside me,” she says.

This time, doctors put Sheppard on weekly infusions of the alkaloid drug she’d taken when she was first diagnosed with cancer. Her white blood cell count dipped drastically.

“I refer to 2002 as my year from hell,” she says. “I had to start getting injections on Tuesday, Wednesday and Thursday to counteract this side effect. Friday was sort of a recuperation period, then I’d be back at the cancer center for treatment the following Monday.”

At home, as she prepared for the week ahead, Sheppard would gaze at a pond through an open window as she applied her makeup. “My mom would cook all types of vegetables, and I ate very well, and my young sister-in-law

she underwent stabilized her cancer and helped her push through the daily aches and pains associated with metastatic disease.

She enjoyed going to the beach with them, cooking together and marveling at Orlando’s gorgeous sunrises and sunsets as a family.

I THOUGHT ABOUT MY DAUGHTERS AND WAS DETERMINED NOT TO GIVE IN.

GIVING BACK: THE RV ADVENTURES Several years later, Sheppard discovered the national nonprofit Living Beyond Breast Cancer (LBBC), reaffirming her connection to the cancer support community. “This was in 2014, the same year that my oldest daughter graduated from high school. I knew about a few organizations, but at that point, I was divorced and wanted to push everything into their lives that I could to help them get through,” she says. “When I went to that first breast cancer conference and started learning different techniques to manage cancer and information that I could take and give to someone else, that boosted my spirit again.”

Later, Sheppard learned about METAvivor, an organization for men and women living with MBC. “We had an RV that I have driven all over the country, from Colorado to Seattle,” Sheppard says. “We would drive to different locations to give out pamphlets and talk to other survivors and family members.”

Now 22 and 24, Alyah and Alexis joke with their mother about these RV adventures. But the young women understand their mother’s deep commitment to her calling as a volunteer. “I live my life day by day and doing as much as I can for everyone that I can,” Sheppard says. “Organizations like METAvivor have propelled me forward.

When you’re busy trying to help others negotiate their problems, you don’t have much downtime to think about your own troubles or have a negative attitude.”

As a METAvivor board member, Sheppard attends events and shares her experiences with young mothers she meets who have MBC. “When I was first diagnosed with metastatic breast cancer, I wasn’t expecting to see my daughters graduate from elementary school,” she says.

“This is why I’m not going to sit idly by and not try to encourage and support the next person.”

Eventually, Sheppard’s passion for advocacy earned her

the nickname “Mother Terlisa.” “I was always just that nurturing type, even before I had my own daughters, and I’ve been that way in the community for the younger survivors and mothers because I’ve been there and can relate to being diagnosed with MBC that young while pregnant,” she says. “I feel and have always felt a sense of protection and wanting to be there for others on this journey.”

One recipient of Mother Terlisa’s love was Julia Maués (see “Connections,” page 8), who, like Sheppard, was pregnant when she was diagnosed with MBC and brain metastasis in 2013, at age 29. Her doctor had told her about Sheppard, but the two women didn’t meet in person until an LBBC conference in 2018. They hugged and Maués cried. She told Sheppard that she sometimes wondered whether she was a myth!

“She said, ‘I am very real! And the baby I was carrying when I was diagnosed is now a college student, and she is here!’” Maués recalls. “So I met Alyah as well, and that was a happy day!”

KEEP ON KEEPING ON Earlier this year, Sheppard underwent another surgery— a craniotomy—to remove scar tissue that formed after her stereotactic radiosurgery procedure. Her brain had swelled, which triggered unbearable headaches. She asked her sister to take pictures of her after the operation to add to the scrapbook.

“It’s a part of my journey, and there’s something about sharing your story through pictures and journaling and what it can do for the next person. I use it as a tool to talk to other cancer survivors,” Sheppard says. “Plus, my daughters grew up in that scrapbook!”

When Alyah was diagnosed with COVID-19, the two were living together. “So I had to take care of my daughter and also protect myself in the house, and I did it,” she says, recalling this scary time. “So far, I’ve been doing very well. I’ve gotten vaccinated against the coronavirus, and, at this point, I just keep going. I haven’t let all these diagnoses of breast cancer stop me. I’m going to go until I can’t go anymore!” ■

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HOW DOES THE IMMUNE SYSTEM FIGHT CANCER? The immune system has a natural ability to shut down cells that grow out of control, but cancer has many ways to get around these defenses.

Here’s a look at the different players in the immune response and how immunotherapy can help them do a better job.

BY LIZ HIGHLEYMAN

THE IMMUNE SYSTEM IS AN AMAZING ACCOMPLISHMENT of evolution. Day in and day out, an army of immune cells patrols the body, looking for invaders like bacteria and viruses as well as distressed cells, such as cancer cells growing out of control.

If things are working right, sentinel cells recognize pathogens and abnormal cells and call other soldiers into action to destroy them. Many things can go awry with such a complex system, however, and cancer has developed numerous ways to hide from or disable immune responses.

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But researchers have in turn devised ways to restore the immune response against cancer. These include immunotherapy drugs that take the brakes off T cells and adoptive cell therapies that use natural or genetically engineered T cells. New therapies that employ macrophages and natural killer (NK) cells are in the works. Current immunotherapy doesn’t work equally well for all patients or for all types of cancer, but experts are optimistic.

“The human immune system is so incredibly powerful that we think it can be leveraged against multiple targets,” says Marcela Maus, MD, PhD, of the Massachusetts General Hospital Cancer Center.

AN IMMUNE SYSTEM PRIMER It has long been clear that the immune system can naturally fight cancer. Mice without a functional immune system and people with compromised immunity are prone to developing malignancies. Many early-stage cancers never progress, and some even go into remission on their own.

But, says Nicholas Jarjour, PhD, a Damon Runyon postdoctoral fellow at the University of Minnesota Medical School, “There’s not a lot known about those normal processes of fighting cancer.”

The immune response is carried out by a diverse array of white blood cells produced in the bone marrow (see “Cells of the Immune System,” page 25). They patrol the body looking for pathogens and damaged cells, a process known as immune surveillance. This is straightforward for bacteria and viruses, which are recognized as “foreign.” Fighting cancer is trickier because malignant cells are derived from normal cells. During their development, immune cells that target the body’s own proteins are eliminated so they won’t cause autoimmunity.

The two main branches of immunity are the innate and adaptive immune systems. When a threat is encountered, the innate, or nonspecific, immune system goes into action first, providing built-in protection. Neutrophils and other first responders mount a rapid response against bacteria, parasites and allergens.

Macrophages, or “big eaters,” vacuum up pathogens, cellular debris and other harmful substances. Natural killer cells recognize and destroy virus-infected and malignant cells. These immune cells also release cytokines, chemical messengers that promote inKiller T cell flammation and call other fighters into (blue) attacks action. Sentinels known as antigena cancer cell presenting cells (APCs) display proteins (red).

from pathogens (antigens) or abnormal tumor proteins (neoantigens) to alert B cells and T cells.

“Basically, the immune system is dependent on noticing something that’s different from the normal state of the body,” says Jarjour. “Often, in the case of a tumor, there’s a mutated protein or something else that the immune system can specifically recognize. If it can identify something that’s seemingly foreign, it can use that as a basis to mount an immune response that will destroy the tumor.”

APCs, such as macrophages and dendritic cells, are the main link between the innate immune system and the adaptive immune system, which responds to specific threats. B cells and T cells are more specialized, each recognizing a single antigen. Some APCs carry antigens to lymph nodes, where T cells learn to identify them.

B cells evolve into plasma cells, which produce antibodies that bind to foreign antigens like a lock and key. B cells don’t seem to play much of a role in fighting cancer.

T cells are a different story. CD4 “helper” T cells are like generals that coordinate the immune response. CD8 “killer” T cells are like soldiers that destroy cells infected with viruses or malignant cells. Another subset known as regulatory T cells turn off immune responses to prevent harm to the body.

What’s more, the immune system has a memory. When an immune response has run its course, a set of long-lived memory B cells and T cells remain, enabling the immune system to respond more efficiently to the same threat in the future.

HOT AND COLD TUMORS But cancer has several tricks for evading immune defenses.

Malignant cells can disguise themselves as healthy cells, hide where the immune system won’t see them, throw up roadblocks and suppress immune responses.

Sometimes the ongoing battle can leave T cells exhausted and dysfunctional. In addition, many people with cancer have a weakened immune system due to age, and chemotherapy and radiation can damage immune cells.

And some cancers, such as leukemia and lymphoma, affect the immune system itself as abnormal white blood cells grow out of control and crowd out functional ones.

“There’s three ways, in general, that tumors can get around the immune system,” says Jarjour. “One is basically by being invisible. If they don’t have many good targets, the immune system won’t be able to distinguish cancer cells from the normal cells they were derived from. Another

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Hematopoietic stem cell

Red blood cell

Eosinophil

Myeloblast

Neutrophil

Basophil

Monoblast

B cell

Macrophage

is geography. Some tumors are very good at setting up barriers to keep immune cells out. The third is active inhibition of immune cells. There are many ways that tumors do that, and they can leave the immune system pretty bruised and battered.”

The tumor microenvironment presents physical and chemical barriers to T-cell entry and mobility. Tumors may contain a large number of regulatory T cells and tumorassociated macrophages that suppress immune responses.

The microenvironment is often hypoxic, or low in oxygen, which impairs T-cell metabolism. Some cancers can hijack immune checkpoints, switches that act as a brake on Tcell activity. The most well known is PD-1, a marker of immune exhaustion on T cells. When PD-1 on T cells binds with the PD-L1 protein on tumors, T-cell activity is turned off; checkpoint inhibitors block this interaction and release the brakes.

The distinction between “hot” and “cold” tumors is a new concept in oncology. Hot, or inflamed, tumors (for example, melanoma and non-small-cell lung cancer) have many mutations and express neoantigens that attract T cells. Cold tumors (for example, ovarian cancer and prostate cancer) are like “immune deserts.”

“A hot tumor is one that is infiltrated by immune cells like T cells, which suggests that the immune system is

24 CancerHealth FALL 2021 cancerhealth.com

Lymphoblast

T cell

Natural killer cell

Megakaryblast

Platelet

actively trying to control the cancer. These tumors are more likely to respond to immunotherapy because they just need a nudge in that direction,” explains Maus, whose work involves engineered T cells. “A cold tumor is one that is keeping T cells out and may have cells in it that are especially good at suppressing an immune response.”

OVERCOMING IMMUNE EVASION Scientists have come up with numerous approaches to help the immune system recognize and fight cancer. Some stimulate the immune system to work better, while others remove barriers that impede an effective response.

Immunotherapy is not a new idea. Over the centuries, doctors have noticed that tumors may shrink after an infection. In the late 19th century, William Coley—considered the “father of immunotherapy”—observed that some people experienced cancer remission after they developed a severe streptococcal skin infection; he then began administering the bacteria to patients, with mixed results.

Although the intricacies of the immune system were not well understood at the time, from today’s perspective, it appears that the immune response to the bacteria had a collateral effect on cancer. But inconsistent outcomes, the risks of the procedure and the advent of chemotherapy and radiation therapy put immune-based therapy on the

DREAMSTIME

Erythroblast

CELLS OF THE IMMUNE SYSTEM • Hematopoietic stem cells: progenitor cells that give rise to all types of blood cells • Neutrophils: abundant short-lived white blood cells that act as first responders, digesting pathogens and releasing cytokines to activate other immune cells • Eosinophils: innate immune cells mainly responsible for fighting parasites • Basophils: innate immune cells that release histamine and play a role in allergic reactions and inflammation • Mast cells: immune cells that play a role in allergic reactions and inflammation • Monocytes: circulating immune cells that digest pathogens and produce cytokines; when they enter tissues, they evolve into macrophages and sometimes dendritic cells • Macrophages: immune cells in tissues that engulf pathogens, abnormal cells and cell debris and present antigens to B cells and T cells • Dendritic cells: immune cells that present antigens to B cells and T cells, serving as a major link between the innate and adaptive immune systems • Natural killer cells: nonspecific lymphocytes that target virus-infected cells and cancer cells • B cells: lymphocytes that mature in the bone marrow and evolve into plasma cells, which produce antibodies (humoral immunity) • T cells: lymphocytes that mature in the thymus gland and are responsible for cellular immunity • CD4 “helper” T cells: adaptive immune cells that coordinate immune activity, including cytokine production and activation of B cells and CD8 T cells • CD8 “killer” T cells: adaptive immune cells that destroy virus-infected cells and cancer cells (also known as cytotoxic T lymphocytes) • Regulatory T cells: cells that dampen immune activity to prevent the immune system from attacking the body (also known as suppressor T cells) • Red blood cells: cells that carry oxygen-rich blood throughout the body (also known as erythrocytes) • Platelets: cell fragments responsible for blood clotting (also known as thrombocytes)

back burner for several decades.

That changed in the 1980s when James Allison, PhD, now at the University of Texas MD Anderson Cancer Center, and others discovered the T-cell antigen receptor and the first immune checkpoint molecule, ultimately leading to the approval of the checkpoint inhibitor Yervoy (ipilimumab) in 2011. Eight checkpoint blockers are now approved for many types of cancer.

While checkpoint inhibitors work well against hot tumors, they aren’t very effective against cold tumors that keep immune cells out. So researchers are exploring ways to turn cold tumors hot. “Engineering the T cell itself is a powerful strategy because you can change its genetic code or add in new genes to redirect it or force it to penetrate cold tumors,” says Maus.

Approaches to boost T-cell activity include collecting tumor-infiltrating lymphocytes—proven cancer fighters— from a tumor sample, multiplying them in a lab and returning them to the patient. Monoclonal antibodies known as bispecific T-cell engagers attach to a T cell and a tumor protein, bringing the T cell close enough to attack the cancer. CAR-T (chimeric antigen receptor T cell) therapy reprograms a patient’s T cells with synthetic receptors that recognize cancer.

Researchers are also developing oncolytic viruses that both kill malignant cells directly and rally a broader immune response as well as vaccines that teach immune cells to recognize cancer neoantigens.

So far, most immunotherapies rely on the adaptive branch of the immune system. But therapies that marshal innate immunity are also in the works, including CAR-NK cells and CAR-macrophages. Because they’re not custommade to target an individual patient’s cancer, researchers hope they can be used as off-the-shelf therapies that would be easier and less expensive to produce.

Ultimately, most experts think combination approaches that involve different aspects of the immune response—in effect, releasing the brakes and stepping on the accelerator at the same time—hold the most promise. Old standbys like chemotherapy and radiation can help too, as dying cancer cells release antigens that can spur immune cells into action.

“Looking over the last 20 years, it’s remarkable how cancer immunotherapies have broken onto the stage,” says Jarjour. “The hope is that we can go from having a subset of patients who are seemingly stably cured of their cancer to expanding that curative treatment to more patients.” ■

cancerhealth.com

FALL 2021

CancerHealth 25

LIFE WITH CANCER

BY WARRING KHUSHWINDER

Happiness I WAS PRETTY ACTIVE IN 2018.

I have been married since 1987 and have been an engineer for 30 years. We have a daughter who is a doctor and a son who is an engineer. I am Sikh, and we have a huge faith.

One day, I was cleaning the pool and felt pain on my rib. I let it go, but the next day, it was so bad I couldn’t stand up, couldn’t walk. At the emergency room, they found a bone lesion on a rib with a CT scan. Even with painkillers, I couldn’t sleep.

I was diagnosed with multiple myeloma. At the University of California, Davis, I had radiation and five three-week cycles of chemotherapy. I was strong, but by the fifth cycle, my feet were burning. I was weak. We finished that cycle; the results were good.

But when I came home, as the medication wore off, I started getting a lot more burning pain

26 CancerHealth FALL 2021 cancerhealth.com

on the bottom of my feet. I was screaming, crying, all day. I went to see David Copenhaver, MD, who runs the cancer pain program. I was in a wheelchair. He prescribed non-opioid painkillers, a partial opioid, oral ketamine and an antidepressant that works for pain. It was an amazing thing. My pain was reduced significantly. I felt so good.

I was able to sleep that night.

That summer, I wanted to visit the Golden Temple in Amritsar in India with my daughter and her fiancé. I have been going every two years. When I visit the temple, I feel the good aura, being around good people.

But at times, I am not able to put my feet on a hot or cold floor. The temple has a round floor made of marble. You have to go barefoot. I was praying about it, worried about it. But I was strong with my faith, and, with pain medications, I did it.

My pain medications have been adjusted down, but I still need them. I have side effects, including constipation and feeling sleepy during the day. I take eight or nine medications. My cancer is cured, but my neuropathy is a chronic issue.

With pain medication, I am able to live, but it is my

Medication Sikh practice and meditation that gives me help Warring strength and Khushwinder happiness. live well with chronic pain.

Happiness Below: the doesn’t come Golden Temple from money or in Amritsar. health or a big family, but from the way you think, the way you live your life. You can feel the happiness while you are meditating, closing your eyes.

You cannot be happy without some pain, some trouble.

I want to go back to living a very simple life. In our teaching, God has given you a family, and family is for you to serve. God does not create anything that is not amazing.

Life isn’t about living longer.

It’s about living life, serving others. Do your hard work, share with people. The doctors will work hard to protect you, to save you, and you can still live a life. Life is very precious. I am blessed to do what I can do while I am living. ■ For more first-person essays: cancerhealth.com/stories

(KHUSHWINDER) COURTESY OF WARRING KHUSHWINDER; (GOLDEN TEMPLE) ISTOCK

Warring Khushwinder, 59, an engineer and a member of the Sikh faith, lives in Orangevale, California. He had multiple myeloma.

JOIN THE MOVEMENT TO ACCELERATE CANCER RESEARCH

Right not Right now, now, most most clinical information is not regularly are regularly shared shared with the researchers who are trying cancer trying to to uncover uncover new information about cancer every every day, day, but but you can help change that.

Patients sharing Patients can can help accelerate research by sharing their their data data and and unique experiences.

When researchers, When patients patients stand together with researchers, they treatments. they can can unlock unlock new discoveries and treatments.

People eligible to to People with with all all types of cancer may be eligible join join Stand Stand Up Up To Cancer, Count Me In and more more than than 7,500 7,500 patients who have already participated the participated in this mission to accelerate the pace pace of of cancer cancer research.

Find out more and sign sign up up to join the movement movement at at StandUpToCancer.org/CountMeIn StandUpToCancer.org/CountMeIn

Uzo Aduba

Uzo Stand AdubaUp To Cancer Ambassador Stand Up To Cancer Ambassador

Photo By Matt Sayles Photo By Matt Sayles

Stand Up To Cancer is a division of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization.

Stand Up To Cancer is a division of the Entertainment Industry Foundation (EIF), a 501(c)(3) charitable organization.

CAN532937.pdf 08.19.2021 08:08

ESA

GOOD STUFF

BY KATE FERGUSON

CELEBRATE WELLNESS Fall care, comfort and the healing power of hope Cancer treatment can make sleeping hard. Made of special fibers and filled with a designer down alternative, the Body Chemistry SoftCell Comfy Reversible Pillow (queen size, $59.99; king size, $64.99) supports restful slumber, while the Bedsure Healing Thoughts Throw Blanket (various colors, $19.99) will keep you cozy.

Soothe and rejuvenate skin stressed from cancer treatment with Violets Are Blue’s Beloved Face & Body Lotion (8 oz., $48).

This nongreasy and easily absorbed blend of natural oils provides skin left dry and damaged from chemotherapy with vitamins A, B-1, B-2, D and E. The lightly scented product was developed by New York City realtor Cynthia Besteman two years after her breast cancer diagnosis. Her company includes the lotion in a package of Beloved products gifted to patients on their first day of chemo at the Dubin Breast Center in New York City.

28 CancerHealth FALL 2021 cancerhealth.com

Bras that are easier and more comfortable to wear are a godsend for women recovering from breast cancer surgery. The Battle Cry Pink Bra (various colors, $54) by bra and activewear maker Handful includes free foam inserts that can serve as prosthetic breasts. The company offers cancer survivors a 30% discount on all purchases and donates 12.5% of the revenue from sales of the bra to the Young Survival Coalition, an international nonprofit dedicated to young adults affected by breast cancer.

Is chemo making your stomach do flip-flops?

Strap on the Reliefband Classic Anti-Nausea Wristband (fits wrist sizes 4.5 to 9.25 inches, $129.99). The device features an adjustable nylon strap and five intensity settings that work to normalize messages running from the brain to the stomach via the nerves to quickly relieve symptoms of vomiting and nausea. It comes with preinstalled batteries for 150 hours of continuous use.

Chemotherapy and radiation can aggravate men’s sensitive facial skin.

Formulated with nourishing ingredients, Kiehl’s Beard Grooming Oil (1.0 fl. oz., $30) is reputed to keep your beard supersoft as well as hydrate the skin to help protect it from redness and irritation.

Years of engaging with cancer patients taught naturopathic physician and scientist Paul S. Anderson, NMD, that individuals could improve the quality of their lives. In his book, Cancer: The Journey from Diagnosis to Empowerment (Kindle, $6.49; paperback, $14.01), Anderson explores hope, a sixth stage of healing grief that he believes can help patients take control of their health and transcend their diagnosis.

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

PersonalCare

FinancialCare SurvivorCare PetCare EducationalCare EmotionalCare

CancerCare...

If it matters to you, it matters to us.

Meet Thomasina.. She’s a healthcare professional, adept writer, mother, and metastatic breast cancer survivor. When Thomasina first started her journey, she needed the individual attention that only a social worker could provide. She needed the financial assistance to help pay for multiple medications and doctor’s visits. She needed the motivation and tenacity to help others like her. She needed CancerCare.

We’re still here for Thomasina, and we are here for you too.

800-813-HOPE (4673) | WWW.CANCERCARE.ORG

RESOURCES

BY CAROLINE TIEN

Prostate Cancer Resources THESE ORGANIZATIONS PROVIDE UP-TO-DATE TREATMENT OPTIONS while offering emotional support and patient and caregiver connections.

cancer.org

The American Cancer Society has a wealth of information about prostate cancer—from prevention to diagnosis to treatment to survival—in the form of articles, quizzes, videos and diagrams. The site answers common questions, such as “What kind of treatment will I need?” and “What will happen after treatment?”

CANCER.NET cancer.net

Cancer.net, the patient portal for the American Society of Clinical Oncology, provides oncologist-reviewed articles on prostate cancer in English and Spanish. Its free app, Cancer.net Mobile, allows you to schedule appointments, set medication reminders, track the frequency and severity of symptoms and side effects, and record questions for your care team.

CANCERCARE cancercare.org

CancerCare provides free oneon-one sessions with oncology social workers via its website and its hotline, Hopeline— 800-813-HOPE (4673)—to help handle the emotional and practical aspects of a diagnosis. The organization provides financial assistance, runs Q&A sessions

30 CancerHealth FALL 2021 cancerhealth.com

and workshops about prostate cancer and treatments, and offers patient support groups.

FANS FOR THE CURE fansforthecure.org

Fans for the Cure raises awareness among men and their families about the role of prostatespecific antigen (PSA) screening in prostate cancer detection. It also produces a podcast, Stay in the Game!: Conversations About Prostate Cancer With Ed Randall, that covers issues from caregiving to patient advocacy and offers patient support groups for both men and women.

PROSTATE CANCER FOUNDATION pcf.org

The Prostate Cancer Foundation is intent on finding a prostate cancer cure. Since its founding in 1993, it has facilitated a significant increase in the number of prostate cancer drugs approved by the Food and Drug Administration. It supports researchers and clinicians through grants and offers patients and caregivers printed guides and help finding doctors, treatment centers and clinical trials.

PROSTATE HEALTH EDUCATION NETWORK prostatehealthed.org

The Prostate Health Education Network (PHEN) supports African

Americans who have been diagnosed with prostate cancer and aims to eliminate racial disparities in diagnosis and treatment. It also offers a survivor network, and monthly webcasts in partnership with the Dana-Farber Cancer Institute. PHEN produces an annual conference on racial disparities, online TV shows and the stage play Daddy’s Boys (along with churches around the country).

US TOO INTERNATIONAL ustoo.org

Us TOO International offers education resources and support services to men diagnosed with prostate cancer and their families, including a hotline (800-808-7866) and a database of support groups sorted by country, state and risk status.

ZERO: THE END OF PROSTATE CANCER zerocancer.org

Founded more than two decades ago, ZeroCancer is committed to eradicating prostate cancer by funding research into and promoting screening for the disease. The organization is also known for its outreach to veterans, LGBTQ people and Black men, who are at higher risk of developing and dying of prostate cancer than their peers of other races.

Discover more resources: cancerhealth.com/resources

ISTOCK (MODELS USED FOR ILLUSTRATIVE PURPOSES ONLY)

AMERICAN CANCER SOCIETY

BY ABBY SAJID

YOUR TEAM

Treating Blood Cancers

Hematologist John Byrd, MD, is chair of the Department of Internal Medicine at the University of Cincinnati College of Medicine.

What is hematologic oncology?

It’s a specialty that focuses on cancers that derive from the blood and the lymphatic system.

We’re generally talking about leukemia, lymphoma and multiple myeloma and diseases that lead up to them. The specialty is broad. It includes people who treat with medicines and people who do cellular and bone marrow transplants. Clinicians often care for patients and also do research.

COURTESY OF THE UNIVERSITY OF CINCINNATI COLLEGE OF MEDICINE

What are the challenges in treating blood cancers?

Blood cancers generally come on rapidly. You often need to treat them very quickly. Treatment for many of these diseases in the past has been very aggressive. Because blood cancers are less common, up until recently there’s been less interest in the pharmaceutical industry to develop drugs for them.

How has therapy changed?

About two decades ago, the introduction of a drug called Gleevec (imatinib) converted chronic myeloid leukemia to a disease that you treat with a pill.

That served as a prototype for developing targeted medicines that don’t cause a lot of the side effects of chemotherapy. There have been drugs approved for almost every type of blood cancer in the last five years. There’s Who’s on your team? cancerhealth.com/team

New drugs have been approved for nearly every blood cancer, says hematologist John Byrd, MD.

been a plethora of new targeted medicines that have greatly impacted most blood cancers.

When should patients seek out specialists in their particular form of hematological cancer?

The management of cancer in general—whether it’s a solid tumor cancer or a hematologic cancer—has become really complex. It’s very difficult for a general hematology oncology specialist to keep up with everything that’s happening. The best model, in my opinion, is for patients to partner their local physician with a disease-specific expert, particularly at the critical points where they’re deciding on treatment or have an unusual side effect of treatment.

How important is prognostic testing to guide treatment of hematological cancers?

It’s absolutely essential. In some patients, tests that identify the genetics of a particular cancer can direct therapy so they may never receive chemotherapy. It’s important for knowing if they need a more intensive therapy after they get their initial treatment, such as a stem cell or bone marrow transplant or CAR-T cell therapy. In general, prognostic testing—studying the genetics of the blood cancer—is critical to deciding how to treat the disease and allowing the patient to be informed on how they’re going to do.

What inspires you?

I’m inspired every day by the patients I interact with in the clinic and the relationships that we establish. I’m inspired by being able to help them navigate through their disease to become comfortable with it and, when it comes time to treat, to intervene with treatment that in the past was very tough but, in most cases, is now better. I also do laboratory-based work. If I see a patient who has a side effect or a poorly responding cancer, I enjoy trying to work on strategies based on experiments we do in the lab. My research can positively impact that patient or a future patient. ■

cancerhealth.com

FALL 2021

CancerHealth 31

SOLUTIONS

BY KATE FERGUSON

VEGETABLE MAC & CHEESE ½ 4 ¼ 2 ½ 2 ½ ½ 1½ ½

When cancer treatments zap your desire for food, certain meals and methods can help restore it.

LOSS OF APPETITE IS A COMMON SIDE EFFECT OF cancer treatments. In addition, chemo and other therapies may cause altered taste, nausea and mouth sores, making it hard to eat. But these challenges can be overcome.

Speak to your medical team. A dietary expert can help you schedule regular times to eat, select the best types of food and preparation methods for meals, and suggest supplements to take.

Opt for healthy nutrient-dense foods. A great place to start is with your favorite comfort foods. Love mac and cheese? Make a healthy vegetarian version of this luscious, creamy dish with whole wheat pasta and cancer-fighting cruciferous veggies. (See Cook for Your Life’s Vegetable Mac & Cheese recipe, right.)

Eat small meals more often. During the day, snack on quality high-protein, high-calorie foods, such as hardboiled eggs, avocado slices, puddings, cheese, yogurt and tuna or chicken salads made with mayo. Indulge in smoothies made with milk—use protein-rich nut butters or nut milk if you can’t do dairy—and your favorite fresh, ripe fruits, washed and thoroughly scrubbed.

Consume food in other forms. Puree veggies and create a tasty soup, or whip them and add butter. You can also use one of a number of appliances to transform fruits into frozen confections, such as popsicles or ice cream.

Drink enough liquids. It’s important to stay hydrated.

Sip water between meals throughout the day, and reach for fruit juices and drinks to quench your thirst. ■

32 CancerHealth FALL 2021 cancerhealth.com

1. Cook pasta until barely al dente (so it still has a bite).

2. While the pasta cooks, make the béchamel sauce. Melt the butter in a saucepan. Whisk in the flour and cook for 1 to 2 minutes until the mixture (known as a roux) turns a very light golden brown. Whisk in the milk a little at a time until the sauce is smooth. (Now the mixture is known as béchamel sauce.) Reduce the heat and allow to simmer gently, stirring regularly, until the sauce is thick. Add the nutmeg and cheese. Season with salt and pepper to taste and set the saucepan aside.

3. Heat olive oil in a sauté pan over a medium-high flame. Add the chopped cauliflower and sauté until the cauliflower is soft, about 10 minutes. Add the spinach to the cauliflower and cook until the spinach is wilted, about 2 to 3 minutes.

Season with salt and pepper.

4. In a large bowl, mix together the béchamel sauce, cooked pasta, cauliflower, spinach and mozzarella cheese.

Place in a greased casserole dish and bake in a preheated 350-degree oven for about 20 to 25 minutes or until the top is golden brown.

NUTRITION FACTS PER SERVING: Calories: 542; Fat: 27g; Saturated fat: 16g; Polyunsaturated fat: 2g; Monounsaturated fat: 8g; Carbohydrates: 58g; Sugar: 7g; Protein: 22g; Sodium: 649mg ©2021 Cook for Your Life, a 501(c)(3) nonprofit organization. Used by permission.

SHUTTERSTOCK

Reviving Appetite

pound whole wheat pasta tablespoons butter cup all-purpose flour cups warm milk teaspoon freshly grated nutmeg teaspoons grated Parmesan cheese tablespoon olive oil small cauliflower, chopped cups spinach cup mozzarella cheese, shredded salt and pepper to taste

SURVEY

Do you have obesity or overweight? ❑ Yes ❑ No Do you drink alcohol? ❑ Yes ❑ No

CANCER IN WOMEN It’s estimated that one in three women will receive a cancer diagnosis during her lifetime. Making healthy choices can reduce your risk for the disease, and regular screenings can help detect cancer early, when it may be easier to treat. Let us know how you protect yourself from cancer.

Do you do a breast self-exam every month? ❑ Yes ❑ No Have you ever had a mammogram? ❑ Yes ❑ No Have you ever had a colonoscopy? ❑ Yes ❑ No Have you ever been screened for lung cancer? ❑ Yes ❑ No Have you ever been screened for cervical cancer? ❑ Yes ❑ No Have you ever been screened for skin cancer? ❑ Yes ❑ No

ISTOCK

Have you been diagnosed with cancer? If so, what kind(s)? (Check all that apply.) ❑ Breast ❑ Lung ❑ Cervical ❑ Ovarian ❑ Colorectal ❑ Skin Endometrial ❑ ❑ Other ❑ I have not been diagnosed with cancer.

Do you limit your exposure to UV rays from the sun and other sources? ❑ Yes ❑ No

Do you currently smoke cigarettes, or are you a former smoker? ❑ Yes ❑ No Do you have a family history of breast, ovarian or uterine cancer? ❑ Yes ❑ No Have you ever had any of these symptoms for longer than two weeks? ❑ Bloating ❑ Blood in the stool ❑ Changes to the breast or nipple ❑ Chronic coughing ❑ Loss of appetite ❑ Persistent constipation ❑ Skin changes ❑ Stomach pain or nausea ❑ Unexplained bruises ❑ Unexplained weight loss ❑ Unusual bleeding What year were you born? _ _ _ _ What is your gender? ❑ Male ❑ Transgender ❑ Female ❑ Other What is your current level of education? ❑ Some high school ❑ Bachelor’s degree ❑ High school graduate ❑ Graduate or professional degree ❑ Some college What is your ethnicity? (Check all that apply.) ❑ American Indian/Alaska Native ❑ Arab/Middle Eastern ❑ Asian ❑ Black/African American ❑ Hispanic/Latino ❑ Native Hawaiian/Pacific Islander ❑ White ❑ Other _________________________ What is your ZIP code? _ _ _ _ _

Please fill out this confidential survey at cancerhealth.com/survey. Or scan or take a photo of the completed survey and email it to website@cancerhealth.com.

THE PROBLEM WITH CANCER RESEARCH THAT FOLLOWS CONVENTIONAL WISDOM IS THAT THERE’S NOTHING CONVENTIONAL ABOUT CANCER. At the Damon Runyon Cancer Research Foundation, our research focus is singular: High-risk, high-reward.

We believe that only by pursuing and investing in the most audacious and ambitious ideas, and the young scientists who have those ideas, will we achieve real and lasting victory over humankind’s deadliest enemy.

To learn more, visit damonrunyon.org

Sakiko Suzuki, MD Physician-Scientist Inflammation and Cell Death

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