Cancer Health Winter 2019

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

KEEPING THE FAITH

Living With Liver Cancer

A Multiple Myeloma Diary

10 Stress Relief Tips

When Mommy Has Cancer

Going Back to Work Nutrition Matters Does Your Treatment Measure Up?

Why You Need the HPV Vaccine Rick George

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CONTENTS

E xclusively on

Cancer Health.com

Cancer Health Basics

Yolanda BrunsonSarrabo talks about life with multiple myeloma on page 14.

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

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

16 ROUGH & READY Rick George has been through some ups and downs in his battle with hepatitis C and liver cancer. BY TIM MURPHY Plus: Liver cancer among Asians. BY SHAWNE JABONERO LOPES 22 DOES YOUR TREATMENT MEASURE UP? Sorting out PFS, ORR, TTP and the rest. BY LIZ HIGHLEYMAN

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(COVER) ALANNA HALE; THIS PAGE: (BRUNSON-SARRABO) COURTESY OF YOLANDA BRUNSON-SARRABO; (“CANCER,” IV TREATMENT AND TYPEWRITER) ISTOCK

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

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

3 From the Editor Ups and downs 4 Cancer Health News And the Nobel winner is... | HPV vax up to 45 | on track | immunotherapy for breast cancer | PARP-a-palooza | FDA approves Talzenna | checkpoint blockers for lung cancer 8 Voices Lindsay Norris: When mommy has cancer | Lisa Vento Nielsen: Going back to work

26 Your Team Sarah Rafat on good nutrition during and after cancer treatment 28 How To Managing stress when you or a loved one has cancer 30 Gifts Galore Ideas to make the season bright 31 Resources How to find clinical trials

12 Basics Inflammatory breast cancer | cancer-related pain

32 Life With Cancer Roger Pebody might have avoided oral cancer if he’d had the HPV vaccine.

14 Diary Yolanda Brunson-Sarrabo gives the lowdown on multiple myeloma.

33 Survey Tell us about your experience with clinical trials.

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FROM THE EDITOR

Cancer Health TM

EDITOR-IN-CHIEF Liz Highleyman MANAGING EDITOR Jennifer Morton SENIOR EDITOR Meave Gallagher COPY CHIEF Joe Mejía EDITORIAL ASSISTANT Alicia Green ART DIRECTOR Doriot Kim ART PRODUCTION MANAGER Michael Halliday ADVISORY BOARD Timothy Henrich, MD, Carl June, MD, Gaby Kressly, Yung S. Lie, PhD, Gilberto Lopes, MD, Peter Pitts, Hope Rugo, MD FEEDBACK Cancer Health, 212 West 35th Street, 8th Floor, New York, NY 10001, or email info@cancerhealth.com SMART + STRONG PRESIDENT AND COO Ian E. Anderson EDITORIAL DIRECTOR Oriol R. Gutierrez Jr. CHIEF TECHNOLOGY OFFICER Christian Evans VICE PRESIDENT, INTEGRATED SALES Diane Anderson INTEGRATED ADVERTISING MANAGER Jonathan Gaskell INTEGRATED ADVERTISING COORDINATORS Caroline Rabiecki, Greg Rabiecki SALES OFFICE 212-938-2051 sales@cancerhealth.com BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com CDM PUBLISHING, LLC

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CHIEF EXECUTIVE OFFICER Jeremy Grayzel CONTROLLER Joel Kaplan Issue No. 4. Copyright © 2018 CDM Publishing, LLC. All rights reserved. No part of this publication may be reproduced, stored in any retrieval system or transmitted, in any form by any means, electronic, mechanical, photocopying, recording or otherwise without the written permission of the publisher.

Smart + Strong® and Cancer Health™ are registered trademarks of CDM Publishing, LLC. Cancer Health is BPA audited.

Ups and Downs PEOPLE NEWLY DIAGNOSED WITH cancer are often struck by how thoroughly it can weave its way into all aspects of life. Oncologist-author Siddhartha Mukherjee, MD, describes this as entering “cancer world.”

Cancer world is full of ups and downs. Rick George, featured on the cover, is a good example. He developed end-stage liver disease related to hepatitis C and was diagnosed with liver cancer while awaiting a transplant. He bounced back after getting his new liver but later had a recurrence of cancer. As we worked on this story, George had just started a new targeted therapy, his cancer had stabilized and he was feeling great. But as we went to press, we heard he’d developed side effects and was stopping this treatment.

These ups and downs are not always a problem. Targeted therapies and immunotherapies are now being developed so fast that as older drugs stop working, there’s a good chance something new is coming down the pipeline. This beats the usual course during the chemotherapy era, which I remember from my dad’s fight with lung cancer in the late 1990s—lots of downs and not very many ups.

The ups and downs affect not just those living with cancer but also their loved ones. As Lindsay Norris, an oncology nurse living with colon cancer, writes on page 8, “normalizing the abnormal” can be one of the most useful steps, especially for kids.

For many people, normalizing means maintaining a career. On page 10,

breast cancer survivor Lisa Vento Nielsen shares tips for going back to work during or after treatment.

Of course, it’s better to prevent cancer in the first place, if possible. As Roger Pebody explains on page 32, some cancers—like the oral cancer he beat a year ago—are caused by viruses and can be prevented with vaccines.

The HPV vaccine, newly approved for people up to age 45, can prevent cervical, anal and oral cancers. The hepatitis B vaccine is one of the surest ways to prevent liver cancer. There’s no vaccine yet for hepatitis C, but treatment with new antivirals cuts liver cancer risk. Researchers are hard at work to find new ways to tip the scales in favor of more ups than downs.

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

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NEWS

BY LIZ HIGHLEYMAN

And the Winner Is… Two cancer immunotherapy researchers were awarded the 2018 Nobel Prize in Physiology or Medicine for their pioneering work on immune checkpoint inhibitors. Some cancers can hijack checkpoint receptors on T cells to turn off immune responses against them; checkpoint-blocking medications release the brakes.

James Allison, PhD, of the University of Texas MD Anderson Cancer Center in Houston, found that an antibody that blocks the CTLA-4 checkpoint could cure cancer in mice. That work led to the approval of the first checkpoint inhibitor, Yervoy (ipilimumab), in 2011.

Tasuku Honjo, MD, PhD, of Kyoto University in Japan, discovered PD-1, a checkpoint that suppresses immune function. His work led to the development of several drugs that block the interaction between PD-1 and its binding partner, known as PD-L1. Two James Allison, PhD, and PD-1 blockers, Keytruda Tasuku Honjo, (pembrolizumab) and Opdivo MD, PhD (nivolumab), are now approved for several types of cancer.

“By stimulating the inherent ability of our immune system to attack tumor cells, this year’s Nobel laureates have established an entirely new principle for cancer therapy,” the Royal Swedish Academy of Sciences said in its award announcement.

In October, the Food and Drug Administration expanded its approval of the Gardasil 9 human papillomavirus (HPV) vaccine for women and men ages 27 to 45. Previously, the vaccine was available only for those up to age 26.

The vaccine protects against nine different types of HPV, several of which cause cervical, anal, and mouth and throat cancers. Some studies show that oral carcinoma is now the most common HPV-linked cancer.

HPV is usually sexually transmitted, and most people pick up some of the more than 100 types soon after they start having sex. The Centers for Disease Control and Prevention recommends HPV vaccination for girls and

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boys at age 11 or 12, before they become sexually active.

Recent research has found that many people older than 26 have not yet been infected with all the HPV types covered by the vaccine and therefore can still be protected. One study of more than 3,000 women ages 27 to 45 showed that Gardasil 9 was 88 percent effective against persistent HPV infection, genital warts, precancerous lesions and cervical cancer caused by the nine virus types covered.

There’s less research on men, but studies show they develop immunity as well as women do.

If you’re 45 or younger, ask your care provider whether the HPV vaccine is right for you.

(ALLISON) COURTESY OF UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER; (HONJO) COURTESY OF KYOTO UNIVERSITY; (GARDASIL) COURTESY OF MERCK

HPV VAX UP TO 45

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ON TRACK Cancer treatments have traditionally been tested and prescribed for tumors in specific parts of the body— but that’s starting to change.

The Food and Drug Administration decided in late November to approve Vitrakvi (larotrectinib), the first medication developed to treat cancers with a specific genetic mutation regardless of where in the body they occur.

Vitrakvi is a tropomyosin receptor kinase inhibitor that works against cancers with mutations known as TRK fusions. When a TRK-producing gene in a cancer cell fuses with another gene, it acts as an ignition switch to accelerate cancer growth.

Although TRK fusion mutations occur in only around 1 percent of cancers overall, they’re common in some rare cancers.

Vitrakvi made its debut at the 2017 American Society of Clinical Oncology meeting, where researchers reported that among 55 adults and children with 17 types of cancers, about three quarters experienced complete or partial tumor shrinkage.

At the recent European Society for Medical Oncology 2018 Congress, Ulrik Lassen, MD, of Rigshospitalet in Copenhagen, presented follow-up data showing an overall response rate of 80 percent, including 18 percent with complete responses.

After a year on treatment, 75 percent were still responding.

Lassen suggested that everyone diagnosed with solid tumors or brain cancers should be tested for gene fusions to see whether Vitrakvi might work for them.

T cells attacking cancer

Immunotherapy for Breast Cancer First-line treatment with the checkpoint inhibitor Tecentriq (atezolizumab) plus the chemotherapy drug Abraxane (nab-paclitaxel) delayed disease progression or death in women with metastatic triple-negative breast cancer, researchers reported at the European Society for Medical Oncology 2018 Congress in Munich.

Tecentriq blocks the interaction between the PD-1 checkpoint receptor on T cells, which suppresses immune cell activity, and its binding partner, PD-L1. Blocking this linkage restores T-cell activity. People with higher PD-L1 levels in their tumors tend to do better on these medications, but this isn’t a reliable predictor of individual response. So far, this type of immunotherapy hasn’t shown much activity against so-called cold tumors like those seen in breast cancer, but combining checkpoint blockers with chemotherapy holds greater promise.

The IMpassion130 trial enrolled 902 people with triple-negative breast cancer, meaning it lacks hormone and HER2 receptors that would make it susceptible to other medications.

Among people with PD-L1 positive tumors, the median progression-free survival time was 7.5 months for those assigned to Tecentriq versus 5.0 months for those who received a placebo—a 38 percent reduction in the risk of disease progression or death. A preliminary analysis found that the overall survival time was 25.0 versus 15.5 months, respectively.

“Immune therapy on top of standard chemotherapy prolonged survival by 10 months in patients with tumors expressing PD-L1.

This combination should become a new treatment option for patients with metastatic triple-negative breast cancer,” says lead researcher Peter Schmid, MD, PhD, of Queen Mary University of London.

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BY LIZ HIGHLEYMAN

PARP inhibitors continue to shine as a treatment for ovarian, breast and now prostate cancer.

These targeted therapies block poly ADP-ribose polymerase (PARP) proteins, which play a role in DNA repair.

Blocking PARP leads to more DNA breaks, halting cell division.

People with harmful BRCA mutations don’t make proteins to repair this damage, so BRCArelated cancers are more susceptible to these drugs.

One PARP inhibitor, Lynparza (olaparib), currently approved for previously treated ovarian and breast cancer, also works well as maintenance therapy, according to a report at the European Society for Medical Oncology 2018 Congress.

The Phase III SOLO1 trial tested Lynparza as a first maintenance therapy for people with newly diagnosed advanced ovarian, fallopian tube or peritoneal cancers who had

undergone Kathleen Moore, MD surgery and were in remission after platinum chemotherapy.

After three years, 60 percent of those who received Lynparza were still alive without worsening of disease, compared with 27 percent of placebo recipients.

The median progression-free survival time was 13.8 months in the placebo group but was not reached in the Lynparza group

because a majority of patients were still doing well.

Lead researcher Kathleen Moore, MD, of the Stephenson Cancer Center at the University of Oklahoma, estimated that Lynparza could potentially offer about a three-year gain in progression-free survival, which she called an “unprecedented improvement.”

Another study showed that a different PARP inhibitor, Rubraca (rucaparib), slowed progression in men with metastatic prostate cancer who weren’t responding to testosterone-lowering drugs and chemotherapy.

In the Phase II TRITON2 study, Rubraca shrank tumors in 44 percent of men with harmful BRCA mutations and lowered prostate-specific antigen levels in more than half. The median duration of response had not yet been reached because a majority of patients were still responding.

FDA APPROVES TALZENNA In October, the Food and Drug Administration approved a new PARP inhibitor, Talzenna (talazoparib), for people with harmful BRCA gene mutations who have locally advanced or metastatic HER2-negative breast cancer.

The EMBRACA trial showed that Talzenna reduced the risk of disease progression or death by 46 percent compared with chemotherapy. The median progression-free survival time was 8.6 months in the Talzenna group versus 5.6 months in the chemotherapy group. Nearly two thirds of Talzenna recipients saw complete or partial tumor shrinkage. Side effects were common, but women treated with Talzenna reported better overall health.

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(MOORE) COURTESY OF STEPHENSON CANCER CENTER; (TALZENNA) COURTESY OF PFIZER

a-palooza PARP-a-palooza

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Checkpoint Blockers for Lung Cancer Research presented at the World Conference on Lung Cancer in September showed that checkpoint inhibitor immunotherapy, alone or in combination with chemotherapy, shows promise for advanced non-small-cell lung cancer (NSLC).

Some tumors can hijack the PD-1 checkpoint receptor on T cells to turn off immune responses against them. Blocking PD-1 or its binding partner, known as PD-L1, restores T-cell activity.

The PACIFIC trial showed that Imfinzi (durvalumab), a PD-L1 blocker, delayed disease progression and led to longer overall survival in people with inoperable Stage III NSCLC that has not progressed after chemotherapy and radiation. After two years, Imfinzi reduced the risk of death by 31 percent. The

median overall survival time was 28.7 months in the placebo group but was not reached in the Imfinzi group because a majority of those patients were still alive.

The IMpower132 study showed that another PD-L1 blocker, Tecentriq (atezolizumab), used with Alimta (pemetrexed) and platinum-based chemotherapy delayed disease progression in people with more advanced Stage IV, or metastatic, nonsquamous NSCLC who are not eligible for targeted therapy.

After a year, 38 percent of people taking the Tecentriq combo were still alive without disease progression, compared with 17 percent of those who used chemotherapy alone.

In August, the Food and Drug Administration (FDA) granted

full approval of the PD-1 blocker Keytruda (pembrolizumab) plus Alimta and platinum chemotherapy for initial treatment of metastatic nonsquamous NSCLC that lacks targetable gene mutations. The Phase III KEYNOTE-189 trial showed that this combo cut the risk of death by about half compared with chemotherapy alone.

In October, the FDA OK’d Keytruda plus carboplatin and either paclitaxel or Abraxane (nab-paclitaxel) for first-line treatment of metastatic squamous NSCLC, a less common type that accounts for about a quarter of all lung cancer cases. The Phase III KEYNOTE-407 trial showed that this combination works better than chemotherapy alone, extending survival by about 4 ½ months.

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VOICES

BY LINDSAY NORRIS

When Mommy Has Cancer MY SON, HARRISON, was almost 3 ½ and his little sister, Evelyn, was just 5 months old when I was diagnosed with Stage III colorectal cancer at age 33. We were still adjusting to the busy life of a family of four and getting everyone’s schedules straight.

The day I found out I had cancer was a blur.

I remember thinking I would let myself have a pity party for a few hours, but when it was time to get the kids from school, I had to suck it up and act normally. I did OK that first night—dinner, baths and story time as usual.

Harrison and I sang his special good night song, and I rocked Evelyn in her chair. I went to bed early and, surprisingly, slept like a rock.

But the next morning was hard. I woke up to realize the nightmare was actually real, and when I walked into my son’s room to wake him up for school, I lost it. Seeing his worry-free sleeping face and knowing that his innocent world was about to be turned upside down just tore me apart.

The days that followed were busy with diagnostic biopsies

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Lindsay Norris with her children, Harrison and Evelyn, in January 2017

and scopes. Cancer likes to keep you busy and take over your life right away. We already had tickets to a baseball game for that first weekend after I found out, and we decided to still go. It was my first lesson in life with cancer—keep up your normal plans as much as you can. It turned out to be a great day full of distractions and smiles. I told myself that from

that day on, I would do everything in my power not to let cancer take away their fun childhood memories.

“Hey, buddy, Mommy and Daddy have something to tell you…”

That was the start of the hardest sentence I ever uttered to my son.

I was scheduled to have surgery the next day.

Now it was becoming real. I could tell Harrison was already sensing something was going on, so I knew it was time to talk with him about it.

But how? How do you assure them everything will be OK when it very well might not be?

I have always encouraged my patients to be honest with their children when talking about cancer, but facing that conversation myself made me question everything. We explained that I have a very different kind of owie in my tummy that’s called cancer. I told him the doctors will have to take it out with surgery and I will have to take a strong special medicine called chemo that will make me feel pretty yucky.

I answered his questions the best I could and told him I loved him very much. He didn’t

COURTESY OF LINDSAY NORRIS

Lindsay Norris, an oncology nurse living with colorectal cancer, is creator of the Here Comes the Sun blog, which appears on CancerHealth.com. She lives with her husband and children near Kansas City.

bring it up again until that night as I tucked him into bed. He told me that once I was finished with my special medicine, I could have a sleepover with him in his boys-only fort, just me and him. And there it was— the moment I knew I had no choice but to beat this. I had to be here for these kids now and for many years to come.

My goal was to keep things as normal as possible for my kids.

The child life specialist at my cancer center explained that “normalizing the abnormal” and maintaining routines and expectations brings children comfort and a feeling of safety in the midst of illness.

Harrison adjusted really well.

There was a revolving door of visitors at our home and no normal schedule. There were last-minute changes of plans that led to disappointment. He had to be woken up in the middle of the night more than once to be tossed in a car to bring Mommy to the emergency department. He had to learn to keep his hands washed and that Mommy couldn’t always get kisses on the mouth or pick him up. He witnessed Mommy pulling over on the side of the road to throw up, saw the lineup of pill bottles on the bathroom sink—the abnormal became normal. He liked to be a helper and feel included, giving me checkups and feeling my chest port through my skin.

He loved to visit when I was in the hospital and even got to help me ring the bell at the end of treatment.

I would do everything in my power not to let cancer take away their fun childhood memories.

I am no expert, and every kid is different, but I have learned a lot as a cancer patient and a mom of small kids. I’ve learned that they might not always know how to talk about their fears or what questions to ask, but if you listen closely, you can pick up on what they really need in the middle of all the chaos.

I love both of my children deeply, but you probably notice I didn’t mention my sweet daughter very much. Mostly because she was so little when I was diagnosed that I didn’t have to agonize over what to tell her or the questions and fears she might have had. She didn’t know any different. Having a mommy who couldn’t carry her car seat up the stairs or who lay down on the floor as she played with her blocks was simply normal.

I was so crippled with the fear of dying that I think I unconsciously held her at a distance… just in case. I was mad at cancer, mad that it showed up right after I realized my dream of completing my family, mad that it made me stop breast-

feeding my baby and left me too exhausted to have those sweet late-night bonding moments, mad that everyone else around me had to suffer because of my diagnosis.

Right now, I’m cancer-free and we’re back to life as usual— for the most part. There are still moments that take my breath away. “Momma, can we go to Disney World when I’m 10?” (I hope I’ll get to go too.) “Momma, when I have kids, I’m going to have a beard.” (I so badly want to see the people they become and the families they make.) “Momma, do you promise you’ll be my mommy forever?” (Sigh. I sure hope so, buddy.) As harsh as that reality is, I truly appreciate the perspective I’ve been given—it makes me realize how special those everyday moments really are.

No matter what the future holds, I know my kids will be just fine. I’m certain they will both grow up to make their own beautiful mark on the world.

And every day, I pray like crazy I’ll be here to see it. ■

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VOICES

BY LISA VENTO NIELSEN

Going Back to Work Lisa Vento Nielsen, MBA, PMP, is founder of the Balance After Cancer Foundation and creator of the SuperMom—Breast Cancer Eradicator blog, which appears on CancerHealth.com.

If you or someone you love is trying to go back to work after cancer treatment or while living with cancer, here are some tips.

Be confident. Embrace who you are and know that you can bring something valuable to the professional world, even while undergoing treatment or receiving follow-up care.

Confidence is one of the hardest things to maintain as a survivor or person living with cancer. If we get fired or written up, we may feel we are not capable of working. But for many of us, that is not true. Although we might need a more flexible schedule or other accommodations, we are still worthy and many of us are still able to work.

Make sure you have an up-todate résumé. If you have missed some time at work because of your illness, there are ways to hide those blanks. Or you can address it during an interview, saying, “A life event prompted me to take time off, but I am ready to return and know I can do great work for you because…”

Know that your medical status is not public information. You do not have to disclose your

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Lisa Vento Nielsen

illness during interviews or to your supervisors or coworkers.

However, you should inform the human resources staff and let them know whether you need special accommodations or extra time off.

A cancer diagnosis can be a good opportunity to develop a career plan. Knowing what you like to do and what you find meaningful can help you make a move or find a new position that’s right for you. ■ For more free advice and resources from Lisa, visit BalanceAfterCancer.org.

COURTESY OF LISA VENTO NIELSEN

WHEN YOU LEARN THAT YOUR good health is gone—the second you are told, “I am sorry, but you have cancer”—everything else fades away. How can you be expected to be yourself and do your best when your body is apparently a traitor?

Many people with cancer face discrimination at work, lose their jobs or question their careers, identities and passions during their illness. Cancer and its treatments can rob us of everything that makes us “us”— our ability to function at 100 percent, our hair and eyebrows and, most importantly, our belief in tomorrow. Sometimes we can feel as though we’re just a walking slew of appointments, surgeries and treatments. Or we’re suddenly faced with our mortality and the realization that “I do not want to spend what is left of my days here.”

I say “we” because I’m a cancer survivor myself. I’m also a career expert and author, and I’ve helped clients with résumés, career coaching and more. But despite my expertise, after my bout with Stage III breast cancer at age 39—and losing my job the day after my last chemotherapy session—I struggled to return to work. I could not get comfortable in my new body, with my new hair (thanks, chemo!) and my new perspective.

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BY TERRY LYNN ARNOLD AND ANGELA ALEXANDER

Inflammatory Breast Cancer Michelangelo’s Night in Florence, Italy

INFLAMMATORY BREAST cancer (IBC) is defined more by what it is not than by what it is.

This rare, aggressive type of cancer doesn’t fit the description of what we commonly think of as breast cancer.

IBC is highly visible, and women often find it themselves rather than having it detected through screening. Cancer cells block lymph vessels in the skin, making the breast look red, swollen and inflamed. This can also cause nipple distortion and pain. IBC usually doesn’t present as a palpable lump.

Rare but not new, IBC was written about in the early 19th century by Scottish surgeon Sir Charles Bell. Artists have depicted this distinctive presentation in their work, including Michelangelo in his sculpture Night. However, most people have never heard of this type of breast cancer and it is not

commonly taught in medical or nursing schools.

Without even a medical coding number, we can only guesstimate the incidence of IBC. Experts think IBC accounts for 1 to 5 percent of all breast cancers diagnosed in the United States, but it may be responsible for about 10 percent of breast cancer deaths. It’s more common among African-American women and, for reasons not fully understood, seems to be more aggressive in these women compared with white women. Men can and do get breast cancer, including IBC, but this is very uncommon.

Most IBC is invasive ductal carcinoma, which means it develops from cells that line the milk ducts and spreads beyond them. Mammograms and ultrasounds often miss it because of the scattered tumor cells. IBC tends to strike women at a younger age, when the breasts are

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naturally more dense, potentially masking the tumors. It is often initially misdiagnosed as an infection (mastitis) or an injury.

IBC progresses rapidly—often in just weeks or months—and this rapid onset of symptoms is key to diagnosis. About 75 percent of people with IBC are diagnosed at Stage III and the rest at Stage IV, meaning it has spread to distant sites in the body.

The standard of care for IBC is similar to that of locally advanced breast cancer, but mid-treatment scans are done more often to assess the effectiveness of chemotherapy. Half of inflammatory breast cancers are hormone-receptor negative, which means that estrogen does not promote their growth and hormone therapy is ineffective.

After chemotherapy has shrunk the cancer, people with IBC usually undergo a non-skinsparing mastectomy, which is necessary to remove cancer that has invaded the skin. Radiation is also an important part of trimodal care for the best outcomes for this aggressive disease.

Today, although still not widely known, IBC is getting more attention. Hope is arising from dedicated IBC research and specialists developing new treatment paradigms for this virulent cancer with a short life expectancy. ■

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Terry Lynn Arnold is founder of the IBC Network Foundation. Angela Alexander, PhD, is clinical studies coordinator for the Inflammatory Breast Cancer Program at the University of Texas MD Anderson Cancer Center.

BY PIPPA WYSONG

BASICS

Cancer-Related Pain Pain management should be part of a comprehensive treatment plan.

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PAIN IS COMMON AMONG people with cancer, but not everyone with cancer will have problems with pain.

Cancer-related pain is more likely in people with advanced or metastatic disease that has spread from its original site.

Tumors that press against nerves or the spinal cord can cause nerve pain, often accompanied by burning or tingling. Cancer that spreads to the bones can cause deep or throbbing pain.

Cancer treatment can also contribute to pain. Pain after surgery is common because of damage to tissues and nerves or from scarring during the healing process. Radiation and chemotherapy can cause painful side effects, including mouth sores, joint pain and skin rash or burns. Some chemotherapy can cause peripheral neuropathy, or nerve damage, resulting in pain, tingling or numbness in the hands and feet. Medications administered by injection or infusion can result in soreness at the injection site. Some survivors continue to experience pain even after completing treatment.

MANAGING PAIN Because different kinds of pain arise from different sources, there are many approaches to pain management. Sometimes simple measures such as using ice packs or heating pads can help. Often, treatment can be

adjusted to lessen side effects.

For example, chemotherapy may be given in smaller doses to reduce neuropathy. Sometimes radiation or chemotherapy that shrinks tumors can relieve pain even if it doesn’t cure the cancer or prolong survival.

For some people, over-thecounter pain medications are enough, while others will need stronger prescription medications. These may include nonsteroidal anti-inflammatory drugs (NSAIDs) and opioids (drugs related to opiates like morphine). Medications may be administered as pills, patches or by self-controlled pumps.

Some people don’t get enough relief from standard pain medications and may need to be referred to a pain specialist.

Counselors can help teach skills for coping with chronic pain. In cases of advanced cancer with a

poor prognosis, a palliative care team may be brought in. This type of care focuses on making patients comfortable rather than trying to treat their cancer.

Complementary approaches for managing pain include physical therapy, acupuncture, meditation, massage and hypnosis. Studies have shown that medical cannabis can relieve pain in people with cancer.

These approaches may be used alone or in combination.

Be sure to discuss pain with your care team, especially if it is severe, long-lasting or interferes with daily activities. The National Cancer Institute recommends keeping a pain diary to help explain your pain to providers.

Often, it takes time and trial and error to get cancer-related pain under control, but it can usually be managed at all stages of disease. â–

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DIARY

AS TOLD TO MEAVE GALLAGHER

A Multiple Myeloma Diary Yolanda Brunson-Sarrabo was diagnosed with smoldering myeloma in 2008. Now in her 40s, the Pennsylvania resident is a writer, certified fitness trainer and patient empowerment advocate.

I saw my primary care doctor for a checkup. The tests showed my blood proteins were high, around 2,000 grams per deciliter, and he wanted me to see a hematologist. He didn’t explain why, but I learned later that a normal protein range is 6 to 8 g/dL. Two weeks later, he called me again and was adamant that I see a specialist. That scared me a little bit.

December 2008 My first hematologist was not accustomed to treating people my age with multiple myeloma. I was in my 30s, and it usually strikes people in their 70s. He wanted me to take thalidomide, which was then used for treatment. He sent me home with a horrible video on the dangers of the drug, which was his way of telling me and my husband not to get pregnant because it can cause serious birth defects. We decided to seek a second opinion.

An oncologist friend advised me to speak with Robert Kyle, a myeloma specialist at the Mayo Clinic. Dr. Kyle reviewed my test results and told me that I wasn’t yet at the multiple myeloma stage—I had asymptomatic, or smoldering, myeloma, and he didn’t think I needed treatment yet. He recommended a specialist in New York whom I still see today.

January 2009 After redoing all the tests the first doctor did, my new doctor agreed there was no need to treat, just monitor. For five years, I’d go to the hospital before work once a week to have my blood drawn.

December 2012

I underwent surgery for an unrelated condition, which threw my body out of whack and sent my numbers rising. I published a book, Another Face of

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Multiple Myeloma, about my early years with the cancer and what I learned.

Writing has been cathartic for me. Many African Americans are affected by multiple myeloma, but few are my age and I needed to see other people who looked like me. Hopefully, writing about my experience helps others with questions like mine.

November 2014

My blood protein level had skyrocketed to over 7,000 g/dL. My doctor said, “OK, now we have to react.” I started taking Revlimid, dexamethasone and Velcade, which was a shot in the belly every Thursday before work. I was nauseous all the time.

I was working long days in the fashion industry, which doesn’t care what else you have going on. So I never shared my diagnosis or treatment at work.

May 2015

Things were going well. My protein level was at 450 g/dL and my doctor wanted my numbers to go even lower. However, I was still working crazy hours at a stressful job, so I told him I wanted to stick with the same regimen, especially since the side effects had finally subsided.

February 2016

I left the job I’d had since 2003. My doctor thought it was a perfect time to up the ante. We stopped Velcade and started Kyprolis to try to lower my numbers, which had been stagnant for the past six months.

Because of potential side effects, I had to do a stress test and have my blood pressure monitored.

(SNAPSHOTS) COURTESY OF YOLANDA BRUNSON-SARRABO; (PAPER PIECES) ISTOCK

November 2008

From left: Yolanda Brunson-Sarrabo in a New York City hospital, 2017; in New York City, 2016; in Philadelphia, 2015

Kyprolis was administered intravenously over two to three hours, which meant I was spending much more time at the hospital every week.

I had been working on improving my physical fitness, and I decided to get certified as a fitness trainer. One of the nurses at my weekly treatments would study with me. It was a lot of work.

June 2017

My myeloma blood panel showed I had an M spike of zero, meaning my level of myeloma proteins was zero. My doctor and I were excited the regimen was working so well.

February 2018

Since my numbers were still normal, my doctor gave me new options: Continue with the same regimen, continue Revlimid and dexamethasone without Kyprolis, or start immunotherapy. I chose to stop Kyprolis. Some of the things I read about immunotherapy scared me, and my doctor couldn’t predict how my body would react. I thought, Let’s keep going with what’s been working.

July 2018

My numbers still looked good. In November, I’ll do a bone marrow biopsy, and if there’s no residual myeloma, I’ll have the option to stop medication entirely. Multiple myeloma can be tricky. I may want to stay on some medication as maintenance therapy. My doctor and I will talk about it. After 10 years together, my doctor and I have had our ups and downs. We don’t always agree but we respect each other. He’ll suggest something, and I’ll

Multiple myeloma is a blood cancer that affects the bone marrow, where blood cells are produced. Abnormal plasma cells multiply too rapidly, crowd out normal cells and make ineffective antibody fragments. This can lead to bone fractures, low blood counts and increased risk of infection. The abnormal antibody proteins can raise the total blood protein level, which is often how myeloma is first detected. A steep rise in a specific monoclonal, or M, protein is called an M spike.

Multiple myeloma is treated with chemotherapy, immunomodulators and targeted therapy. Related to thalidomide, the immunomodulators Revlimid (lenalidomide) and Pomalyst (pomalidomide) boost immune function and block blood vessel development. Proteasome inhibitors, such as Velcade (bortezomib) and Kyprolis (carfi lzomib), stop protein breakdown. Empliciti (elotuzumab) activates natural killer cells, and Darzalex (daratumumab) targets the CD38 protein on myeloma cells. Thanks to more effective treatments, the duration of remission is increasing and survival is improving.

research it, and if I don’t want to put my body through it, it’s like, “Nope.” You have to advocate for yourself, and you have to do a lot of homework.

September 2018 I finally got my fitness trainer certification. I want to work with people who have chronic conditions and help people in my community. We want to be fit and healthy, but it has to make sense for our physical condition and abilities.

I’ve written for Patient Power, the Myeloma Crowd and Blood-Cancer.com. People reach out to me on social media, thanking me for encouraging them. I’ve met people who’ve just been diagnosed, people who are trying to get through treatment, people whom treatment just can’t help. My story could be so different. I’m very blessed. ■

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Rick George credits his spiritual life—and a little help from his friends—with seeing him through multiple health crises, including liver cancer.

BY TIM MURPHY

R

OUGH AND READY. IT’S NOT ONLY the actual name of the Northern California town where Rick George lives—it also describes his attitude. The native Californian, who grew up near Santa Cruz, has been through a lot in life: addiction, hepatitis C, end-stage liver disease and now his third bout with liver cancer. But he never loses his fighting spirit or his gratitude for whatever good the day may bring.

Rick George has weathered the ups and downs of liver cancer.

“I attribute a lot of that to the work I’ve done applying the principles of the 12-step recovery program to my situation,” he says. “My recovery family has been everything to me.”

Now 57, George’s health challenges began in the late ’90s while he was running a concrete business. He started experiencing extreme fatigue. A blood test in 1999 led to a hepatitis C diagnosis—he thinks he picked up the virus while experimenting with injection drugs when he was 19—and further tests revealed early-stage liver cirrhosis.

“It was pretty devastating,” George recalls. “I was already in recovery, so it jarred me and destroyed my relationship with my wife. I had a brief relapse with alcohol and some substances.”

But eventually, he returned to his 12-step family. “My

[biological] family has never been able to support me, so I get my spiritual and emotional food in the 12-step rooms,” he says.

George worked with a San Francisco healer and took up holistic remedies believed to be good for the liver, such as reishi mushrooms and teas made of licorice and dandelion root.

In 2000, he underwent a round of hepatitis C treatment with pegylated interferon and ribavirin, which he describes as “the most incredibly horrible experience I’ve ever been through.”

The treatment plunged him into such a deep depression—

Liver Cancer Prevention Hepatitis B and C viruses (HBV and HCV) are spread through contact with blood, sexual transmission or from mother to child during pregnancy or delivery.

There is an effective vaccine to prevent HBV infection. It is now routinely given to infants and is recommended for at-risk adults. Antiviral medications can keep the virus under control, but they seldom lead to a cure and may have to be taken long term.

Although no vaccine to prevent hepatitis C infection is yet available, new direct-acting antiviral medications such as Harvoni (sofosbuvir/ledipasvir), Zepatier (grazoprevir/elbasvir) and Mavyret (glecaprevir/ pibrentasvir) can cure HCV in

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Hepatitis B virus

more than 90 percent of people in just eight to 12 weeks—without the notorious side effects of the old interferonbased therapy.

Currently, there is no good treatment for non-alcoholic fatty liver disease (NAFLD) and its more advanced form, non-alcoholic steatohepatitis (NASH), but this is an active area of research. Meanwhile, a balanced diet, exercise and a healthy weight can reduce the risk of liver-fat buildup.

—Liz Highleyman

PREVIOUS PAGES: (GEORGE) ALANNA HALE THIS PAGE: (HEP B) RUSSELL KIGHTLEY

OVER YEARS OR DECADES, chronic hepatitis B or C, heavy alcohol use, fatty liver disease and other causes of liver injury can lead to the buildup of scar tissue known as cirrhosis.

Eventually, working liver cells are replaced with so much scar tissue that the organ can no longer do its job, which includes filtering toxins from the blood and processing nutrients. Scar tissue can also block blood vessels that supply the liver, leading to symptoms such as swelling, fluid buildup in the abdomen (known as ascites) and bleeding veins in the esophagus and stomach.

Unlike most organs, the liver can regenerate itself. But uncontrolled cell growth can lead to liver cancer known as hepatocellular carcinoma.

Fortunately, many causes of liver cancer can be prevented.

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a common side effect of that outdated treatment—that he nearly killed himself with a hunting rifle.

“I was contemplating how I could get the barrel in my mouth and my toe on the trigger,” he recalls.

Th ankfully, he ended up in a psych ward instead.

George gave up on hepatitis C treatment and “self-medicated,” as he says, for several years, alternating between drug and alcohol use and periods of recovery.

Recovery seemed to stick when he moved up to the Sierra foothills in the late 2000s, and he racked up a full year of sober living. But by that time, he had progressed to end-stage liver disease with severe swelling and jaundice. His local doctor connected him with California Pacific Medical Center in San Francisco, which put him on a liver transplant waiting list.

George remained on the list for six years, through many health emergencies that included bouts of hepatic encephalopathy as a result of built-up ammonia poisoning his brain. Then came the liver cancer diagnosis in 2008. He needed two rounds of chemotherapy plus radiation pellets injected into the tumor before the cancer shrank enough to keep him eligible for a transplant.

Over the course of these ordeals, his caretaker, a woman named Ann whom he met through the 12-step program, became his girlfriend.

(They’re no longer a couple but remain friends.) “She helped me get to meetings and brought them to my house when I wasn’t able to leave,” he recalls. “She even organized a spaghetti fundraiser for me.”

During the final two weeks before his 2013 transplant, George was on 24/7 dialysis. Once, he says, he had

Liver Cancer Treatment ABOUT 42,000 PEOPLE WILL be diagnosed with liver cancer and about 30,000 will die of it this year, according to the American Cancer Society. Hepatocellular carcinoma (HCC), the most common cancer that starts in the liver, is often detected late and is difficult to treat. Cancer can also spread to the liver from elsewhere in the body, a process known as metastasis.

Early-stage liver cancer can sometimes be cured with surgery to remove a section of the liver. This is not possible if there are multiple tumors, if they have grown into the liver’s blood vessels or if the liver is heavily damaged. In some cases, a liver transplant is an option, but donor organs are scarce and waiting times can be long.

Liver cancer may be treated with external radiation or destroyed using local ablation methods, including freezing (cryotherapy), heating with radio waves (radiofrequency ablation) or injection of alcohol into the tumor. Embolization blocks the main liver artery that supplies tumors. Sometimes chemotherapy drugs or tiny radioactive beads are injected into the artery.

Traditional systemic chemotherapy, which kills fast-growing cells, is not very effective against liver cancer. Targeted therapy attacks cancer more directly. Approved drugs for HCC include Lenvima (lenvatinib), Nexavar (sorafenib) and Stivarga (regorafenib).

Immunotherapy, the newest type of treatment, helps the immune system fight cancer. The PD-1 checkpoint inhibitor Opdivo (nivolumab), which takes the brakes off cancer-fighting T cells, was approved for liver cancer in 2017. A similar medication, Keytruda (pembrolizumab), got the OK in November.

—Liz Highleyman

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“THE CORE OF YOUR FIGHT IS BASED AROUND THE STRENGTH OF YOUR SUPPORT.”

53 pounds of fluid drained out of him in three days.

But when he finally got the transplant, overseen by Assad Hassoun, MD, it went well.

“Everything went fantastic,” he recalls. “I was walking the hills of San Fran 48 hours later.”

Around the same time, the then-new and highly effective antiviral drug Sovaldi (sofosbuvir) cured his hepatitis C. “All my recovery friends were, like, ‘Go, Rick, go!’” he says.

But just when it seemed that George was finally in the clear, a routine scan two years later detected a mass the size of a tennis ball on his left adrenal gland, above the kidney. A biopsy showed it to be hepatocellular carcinoma that had spread from his old liver.

“They didn’t see it during the previous scan, so it just blew up in four months,” he says. “It was a shock to the gut that I’ll never forget.”

George had surgery to remove the mass and the top of his kidney, but a few scans later he was found to have an even larger cancerous mass, and this time it was considered inoperable.

On top of all of this, George also learned that he’s diabetic. “I thought the diabetes symptoms were treatment symptoms,” he says. Now that he takes insulin shots, he says he feels “a lot better,” but he still struggles with fatigue and bone and muscle pain.

For nearly two years, George took the targeted therapy medication Nexavar. This caused the dreaded side effect of hand-foot syndrome—painful reddening, swelling and blistering on the palms of the hands and soles of the feet—as well as gum ulcers. It was so bad that he had to halve his dose. “It was horrible, but I knew it was part of what I had to do to get as much life as I can,” he says.

In late August, George started on the newly approved drug Lenvima, which is supposed to have far gentler side effects. “The latest news is everything is stable and unchanged in terms of the lesion size,” he says. “I’m feeling fantastic. This new treatment is much easier on me and

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the hand-foot syndrome is gone. I’m feeling really blessed and extremely optimistic.” His next scan is scheduled for mid-November.

All these health burdens might break a less spiritually oriented person, but George says the 12-step teachings and his friends keep him grounded. “It’s like having the best IndyCar pit crew you could ever want,” he says. “Life is really good to me today. Despite all my catastrophes, I have the deepest sense of gratitude. I should’ve died about six times in the last 10 years.”

It helps, he says, to “get outside of myself,” which he does by serving as a volunteer for the Rough and Ready Fire Department. He enjoys competition motorcycle riding and has taken up yoga. Plus, he has seen the same therapist at least every other week for eight years. “That’s great for when I really want to go deep and other people can’t handle me talking about cancer,” he says.

George believes deeply in a higher power, saying, “It gives me something to help navigate my life, build my courage and manage my fears of terminal illness. It’s just something you gotta deal with.”

His advice to other folks facing cancer or any serious chronic illness? Put together a great support team. “The core of your fight is based around the strength of your support,” he says. “And I’d suggest finding a higher power to guide you and give you strength, whatever that might look like to you.” ■

BY SHAWNE JABONERO LOPES

Liver Cancer in the Asian Community

ARLENE EASTERWOOD

Shawne Jabonero Lopes, DACM, LAc, an acupuncturist and traditional Chinese medicine practitioner in American Canyon, California, shares her family’s liver health story.

I AM A FIRST-GENERATION Filipina American living with hepatitis B. My father, mother, younger brother and I all tested positive for hepatitis B virus (HBV) in 1988, after my brother came down with jaundice as a toddler. Later, we discovered my father’s siblings also had the virus, which we all contracted through birth.

My family and I weren’t told much after testing positive, except that we were chronic “carriers.” I don’t recall ever being told that my condition was serious or that I should have my liver function monitored regularly.

In 2004, my father was diagnosed with liver cancer.

We were told that he had only a few months to live, with few options for treatment. He passed away the following year, surrounded by family—his children, our mother and his siblings. He was 53.

HBV is widespread throughout Asia, and around 1 in 10 Asian Americans have chronic hepatitis B infection. Although Asian Americans and Pacific Islanders make up less than 5 percent of the population, we account for more than half of the nearly 1 million people living with chronic hepatitis B in the

United States. We also have the highest rate of liver cancer.

Hepatitis B and liver cancer represent the greatest health disparity between Asian Americans and Pacific Islanders and the general U.S. population.

Shawne After losing our Jabonero dad, we didn’t Lopes immediately make the connection between hepatitis B and his cancer. We didn’t realize we were also at risk. Nor were we under the care of a liver specialist, as all people with hepatitis should be. But Dad’s death reminded us how short life can be, so we made it a point to live healthier lives. I decided to study Chinese medicine and my brother, AJ, became an Ironman triathlete.

It wasn’t until a couple of

years after our dad passed that my doctor explained the seriousness of hepatitis B—that it could lead to complications, including cirrhosis and liver cancer. He emphasized that I needed to have semiannual checkups with a liver doctor, and I made sure to communicate this to my mother and brother.

Unfortunately, I was the only one who followed the recommendation. In 2014, just a few months after completing a full Ironman triathlon, AJ was diagnosed with end-stage liver cancer.

We lost him three months later. My brother was a vibrant, energetic 30-yearold husband and father of two young children with a baby on the way.

I’ve made it my life’s work to help spread awareness about hepatitis B and the impact it has within the Asian community.

Many are unaware that they are at risk and never get screened for HBV. Some know they have hepatitis B and avoid discussing it with their friends, families or doctors out of fear or shame. This needs to change. Knowing our status and regularly monitoring our liver health can ensure that hepatitis B doesn’t have to end with cancer.

DOES YOUR TREATMENT MEASURE UP?

ORR, PFS, TTP… we help you sort out what they mean.

A

SSESSING WHETHER CANCER TREATMENT IS working is not always easy. Improved survival may be the ultimate goal, but other factors matter too, including quality of life and timely approval of new therapies. The advent of new types of treatment and testing methods increases the complexity of interpreting response.

Experimental therapies are evaluated in clinical trials, which proceed through a series of steps to determine whether a new treatment is safe and effective. Different measures of treatment response, known as endpoints, are used throughout the process.

Overall survival (OS)—the gold standard of oncology endpoints—is the time from the start of treatment until death from any cause. OS is usually expressed as a median, or point at which half of the participants have died. This cannot be determined and data are described as “immature” if a majority are still alive.

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Survival is easy to measure and compare across studies, but it can take a long time for an OS advantage to show up, especially for early-stage or slow-growing cancers.

If a treatment works well, many years might elapse before half of study participants die. Long trials are more expensive and patients may try multiple therapies over time, making it hard to know which ones contributed to survival gains. If OS were the only criterion for approval, many people who might benefit from a promising new therapy would be denied access during this waiting period.

“When we think about all these new therapies coming down the road, if we insist on seeing improvements in progression-free survival and overall survival, it will be hard to get these agents approved because the bar is so high,” says David McDermott, MD, of Beth Israel Deaconess Medical Center in Boston. “It’s totally appropriate to expect an OS benefit when you’re dealing with a new drug. But once these treatments are widely available, if

(MEASURING TAPE AND GRAPHIC) ISTOCK

BY LIZ HIGHLEYMAN

a tumor’s metabolic activity, are also used. Because image interpretation involves some guesswork, the most reliable approach is blinded independent central review, in which the same CBR: Clinical benefit rate reviewers evaluate all patients’ scans CR: Complete response without knowing which treatment DCR: Disease control rate they’re using.

DFS: Disease-free survival To evaluate adjuvant (post-surgery) DOR: Duration of response or neoadjuvant (presurgery) treatment, doctors may look for cancer cells in a MFS: Metastasis-free survival biopsy sample (pathological response).

MRD: Minimal residual In people with leukemia or multiple disease myeloma, minimal residual disease NED: No evidence of disease (MRD) means traces of cancer in bone ORR: Objective or overall marrow that could trigger relapse. response rate Some cancers have specific tumor OS: Overall survival markers. A well-known example is PD: Progressive disease prostate-specific antigen (PSA), which indicates prostate cancer progression.

PFS: Progression-free survival New biomarkers are currently being PR: Partial response developed, including measurement of circulating tumor cells.

RESPONSE AND REMISSION PRO: Patient-reported outcome Complete response (CR), or While the surrogate endpoint for RFS: Relapse-free or remission, is the disappearance of all HIV is straightforward—undetectable recurrence-free survival tumors and normalization of tumor virus in the blood—the best interim SD: Stable disease markers. People in remission are someendpoints for cancer treatment are TFS: Treatment-free survival times said to have no evidence of disease not so obvious.

(NED). Partial response (PR) is The objective or overall response TTP: Time to progression defined as at least a 30 percent decrease rate (ORR) refers to the proportion in tumor size. For most cancers, CR of people who experience complete or rates are low and PR rates are higher. partial tumor shrinkage. Although it People who do not respond may either have stable makes intuitive sense that shrinking tumors could lead to disease (SD), meaning existing tumors neither shrink nor longer survival, studies show this is not always the case.

ORR consists of two components: complete response grow and no new ones appear, or progressive disease (PD), and partial response. The duration of response (DOR) is meaning the cancer grows or spreads. PD is defined as at least a 20 percent increase in tumor size. the time from initial response until tumor progression.

Sometimes researchers combine objective response The most widely used system for assessing response is known as Response Evaluation Criteria in Solid Tumors and stable disease rates to come up with a disease control (RECIST), first developed in 2000 and revised in 2009. rate (DCR) or clinical benefit rate (CBR)—meaning RECIST specifies the number of target tumors to be anyone who doesn’t get worse. These are not accepted measured and the amount of change that defines response. FDA endpoints and many experts are critical of them, as Various modifications have been developed, including they combine response, which is a direct effect of a drug, and stable disease, which may simply reflect the natural versions that better reflect response to immunotherapy.

Easily accessible tumors can be measured directly. CT course of disease. Especially in trials without a comparison or MRI imaging scans (radiological response) are used to group, it’s impossible to know whether the absence of assess harder-to-reach tumors. PET scans, which measure progression is attributable to treatment. patients who progress can get the drugs outside the trial, it’s very hard to show improved OS.” In the 1980s, AIDS activists pressured the government to approve drugs faster because people didn’t have time to wait.

It was unethical, they argued, to wait for people to die if there was a way to tell sooner whether treatment was working.

The Food and Drug Administration (FDA) implemented an accelerated approval process in 1992 that allows therapies for serious conditions to be approved based on surrogate, or substitute, endpoints that are “reasonably likely” to predict clinical benefit. In order to gain regular full approval, further trials must confirm that they actually do provide such benefit.

Response Cheat Sheet

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is not affected if patients switch to other treatments after progression.

PFS is widely used and the FDA accepts it as a surrogate endpoint for drug approval, but it is not without controversy.

“I’ve always believed that improvements in PFS can have independent value for patients, even when there is not an OS benefit,” says Kathy Miller, MD, of Indiana University Simon Cancer Center in Indianapolis, citing a recent report about a checkpoint inhibitor that improved progression-free survival by 1.7 months in women with advanced triplenegative breast cancer.

“When PFS is important and what threshold defines benefit is as much a personal decision as a medical one. But for me, a two-month improvement in PFS with the cost and toxicity associated with immunotherapy isn’t worthwhile.”

Jordi Bruix, MD, PhD, of the University of Barcelona, points out that in trials comparing targeted therapies for liver cancer, PFS was the same but OS turned out to be different. And he recalls that accelerated approval of Avastin (bevacizumab) for advanced breast cancer, granted based on PFS, was rescinded after further studies showed no survival advantage.

“Lots of concepts that are used in oncology trials are just practicalities to be able to run trials,” Bruix said at The Liver Meeting in San Francisco in November. “[The endpoint] should be survival and the rest is exploratory. I will keep saying that what is important is to be alive.”

PROGRESSION-FREE Compared with OS, other endpoints can be determined with fewer patients and shorter follow-up. Disease-free survival (DFS), also known as relapse-free or recurrencefree survival, is the time from the start of treatment until cancer recurrence or death. This is especially useful in studies of adjuvant therapies, which aim to prevent cancer recurrence after surgery or radiation.

Some cancers have more specific measures of treatment response. For example, the FDA this year approved two hormone therapies for prostate cancer based on a new surrogate endpoint, metastasis-free survival (MFS), meaning patients are still alive and their cancer has not spread.

“This demonstrates the agency’s commitment to using novel endpoints to expedite important therapies to the American public,” says Richard Pazdur, MD, director of the FDA’s Oncology Center of Excellence.

Progression-free survival (PFS) means patients are still alive without worsening of disease. A related measure, time to progression (TTP), includes disease progression but not death. It can be assessed faster than overall survival because people typically progress before they die. And unlike OS, it

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THE CHALLENGE OF PRECISION THERAPY Targeted therapies and immunotherapies that help the immune system fight cancer present some challenges when it comes to measuring treatment response.

(MCDERMOTT) COURTESY OF BETH ISRAEL DEACONESS MEDICAL CENTER; (MILLER) COURTESY OF INDIANA UNIVERSITY SIMON CANCER CENTER; (BERMAN) COURTESY OF AMY BERMAN; (BRUIX) LIZ HIGHLEYMAN

Data from clinical trials “suggest that DCR or CBR provides ambiguous information that likely exaggerates the anticancer activity of the therapy,” says Mario Sznol, MD, of Yale Cancer Center in New Haven, Connecticut.

Still, many researchers and drug companies are fond of these measures, which can make therapies Clockwise from top left: David McDermott, MD; Kathy look more promising. One Miller, MD; Jordi Bruix, MD, PhD; Amy Berman, RN recent study of immunotherapy for liver cancer, for example, saw a CR rate of zero, a PR rate of 10 percent and an SD rate of 45 percent, allowing the authors to report a disease control rate above 50 percent.

Many targeted therapies interfere with growth pathways to stop cancer from growing and spreading (known as cytostatic) but don’t necessarily kill cells or shrink tumors (known as cytotoxic). For example, angiogenesis inhibitors that block the formation of blood vessels can make tumors appear hollowed out on a scan but might not decrease their size enough to meet RECIST response criteria.

New systems have been proposed to overcome these limitations. The Choi response criteria, developed for gastrointestinal stromal tumors treated with Gleevec (imatinib), include a 15 percent decrease in CT tumor density.

PERCIST criteria use PET scans to detect tumor necrosis, or cell death, even if the size remains the same.

Immunotherapy offers a different kind of challenge: Checkpoint inhibitor drugs take the brakes off T-cell activity, resulting in inflammation that can sometimes resemble disease progression on scans. This presents a dilemma for clinical trial protocols that call for treatment to stop when progression occurs.

“Sometimes you’ll see growth in lesions before you see shrinkage—so-called pseudoprogression—which happens in a very small percentage of patients across multiple tumor types. So some of your best ultimate responders are considered progressors early on because they either have new lesions or growing old lesions,” says McDermott.

Various updated response criteria have been developed for immunotherapy. One modification, dubbed iRECIST, recommends that progression be confirmed at the next scan four to 12 weeks later before stopping treatment.

Researchers and FDA officials discussed how to evaluate response in the immunotherapy era at the recent Society for Immunotherapy of Cancer annual meeting.

McDermott’s group proposed a potential new endpoint— treatment-free survival—to capture durability of response.

Unlike targeted therapies and chemotherapies, some people who receive immunotherapy can maintain durable remission after stopping treatment.

“These treatment-free intervals, where patients come off a drug and have a lasting benefit, is really what they want,” McDermott says. “We need to do better if our goal is to produce more cures for advanced cancer. You can’t get to a cure without remission.”

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“WE NEED TO DO BETTER IF OUR GOAL IS MORE CURES FOR ADVANCED CANCER.” WHAT DO PATIENTS WANT? The oncology field increasingly recognizes the importance of patient-reported outcomes (PROs), which help assess endpoints that matter most to people living with cancer. For example, some people may care more about the severity of side effects than about whether a tumor gets smaller.

It’s important to understand that complete response, remission and NED do not mean a cure. Cancer can hide in the body and come back after remission, and cures are uncommon for people with advanced disease.

But this isn’t always well understood. A study presented at the recent Palliative and Supportive Care in Oncology Symposium showed that nearly 30 percent of people with incurable advanced cancer thought they had at least a 50-50 chance of being cured, while another third were uncertain.

What’s more, those who thought they could be cured were willing to tolerate more toxic treatment.

For these individuals, palliative care that aims to provide comfort and support—rather than treating or curing cancer—may offer a better quality of life.

“The majority of people living with cancer are older adults. What matters most is independence, being able to do the things they enjoy and freedom from pain—the very last is length of life,” says Amy Berman, RN, of the John A. Hartford Foundation. “Researchers look at threemonth increments of survival as their metric of success, which is in sharp contrast to cancer patients’ desire to maintain their quality of life. I have lived well with Stage IV cancer for more than eight years thanks to palliative care. It’s the best friend of the seriously ill.” ■

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YOUR TEAM

BY KURT ULLMAN

Sarah Rafat

Nutrition Is Therapy WHAT YOU EAT CAN HAVE A major impact on your cancer care. Getting the proper amounts of proteins, nutrients and calories in your diet helps you heal after surgery and supports good immune function.

But chemotherapy and other treatments can cause gastrointestinal side effects that interfere with good nutrition.

Surgery to remove cancer in the stomach or colon may

necessitate long-term changes in how you eat. A registered dietitian (RD) can address these issues to help you stay as healthy as possible.

What is a registered dietitian?

A registered dietitian has, at minimum, an undergraduate degree in nutrition science from an accredited university.

Many also have advanced degrees. We must also complete

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a six- to 12-month internship and successfully pass a registration exam. To stay up to date, RDs have continuing education requirements that we must meet to keep our licenses.

What kinds of care do you provide for people with cancer?

You need proper nutrition to heal and maintain a healthy weight. When patients are

COURTESY OF MD ANDERSON CANCER CENTER

Sarah Rafat is a registered dietitian at the University of Texas MD Anderson Cancer Center in Houston.

admitted to the hospital, we assess their nutritional needs— including calorie needs, protein needs and fluid needs—and we make sure these are met during the hospital stay.

We work with surgeons and others on the care team to address nutrition issues that may arise during treatment. For example, the more intensive the surgery, the more protein and calories you will need to get through the rough patch.

How you get your nutrients can depend on the type of cancer you have and the type of treatment that is needed. If the cancer is not in your digestive system and you can still eat normally, we may only have to help you pick the kinds of food that will meet your needs and maintain your weight. Those who have surgery involving the face or neck may get their nutrition through a tube inserted through the nose. If cancer is farther down in the gastrointestinal tract, we can consult about the use and management of feeding tubes that run directly into the stomach or intestines.

Dietitians also work with people who are not hospitalized.

Hospital dietitians communicate with their counterparts in outpatient clinics to provide continuity of care for the patient. Dietitians reassess people who are discharged from the hospital with a feeding tube, and they may need to make changes in the feeding formula or infusion volume.

People can also request to see a dietitian at the clinic when they

have questions or concerns about nutrition.

For some patients, nutrition concerns will continue for the rest of their lives. The dietary needs of people with stomach cancer are very different from those of people with colon cancer. Nutrients are absorbed better by different sections along the digestive system, and we make sure that this is taken into account when prescribing dietary supplements.

Chemotherapy is another area where RDs are called to

What are the challenges of your work?

The main one is helping patients and their family members and caregivers understand the changes that are going on in their body and the role of good nutrition. It’s so much more than just tossing them a handout.

Education about how cancer impacts your diet is essential to good outcomes. I explain the complexities of the changes patients are going through— which can be overwhelming—in a way they can understand.

For some patients, nutrition concerns will continue for the rest of their lives. help. The kinds of food or supplements a patient gets can sometimes lessen side effects such as nausea, vomiting, diarrhea and constipation.

Some medications may change how things taste, which can also be a challenge.

We are responsible for knowing and addressing all your nutrition needs. In addition to working with patients and their families on cancer-related diet needs, we also make sure other dietary concerns, such as food allergies, and preexisting conditions, like diabetes or heart disease, aren’t ignored.

What do you find to be the most inspiring or hopeful part of your work?

The best part of my job is knowing that I help patients and their families during a very trying time. At the end of the visit, I hope they feel satisfied and confident enough to ask me questions without hesitation.

We try to make people feel less overwhelmed, helping them proceed through the steps until everything falls into a smooth system that is their new normal.

We help make them feel that this is a new challenge, but it is not impossible. ■

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WINTER 2019

CancerHealth 27

BY MEAVE GALLAGHER

Managing Stress A CANCER DIAGNOSIS—YOURS OR A LOVED ONE’S—CAN add a lot of stress to your life. There’s so much to learn about the disease and its potential treatments and their side effects.

Sometimes just managing symptoms is a full-time job. But you need to take care of yourself—and not just physically. Take time to tend to your whole being, body, mind and soul.

Meditation is a scientifically proven way to relieve stress and depression. Sit comfortably and let your thoughts go, focusing on steady, rhythmic breathing. You can combine it with other relaxation exercises, such as tensing and releasing individual muscles, or try a free guided meditation app.

Yoga or tai chi can ease aching muscles, improve flexibility and balance, and help clear your thoughts. If an intense workout is too much, take a long walk or a few short ones. Think of exercise as a moving meditation, bringing awareness away from the mind and into the body. Plus, the endorphins your body releases during exercise act as a natural mood booster.

Eating well can help build a better foundation for handling the stress that comes with cancer. Keep your immune system strong with a balanced diet that’s rich in nutrients and emotionally nourishing. Plenty of sleep is essential for recharging—try breathing exercises to ease bedtime anxiety.

Herbal teas like chamomile may aid sleep, but be sure to check with your medical team before trying any supplements or alternative or complementary remedies.

Remember, you’re not alone. Reach out to friends, join an in-person or online support group and remain active in your community. Join a crafting group or a book club to keep your mind focused on something other than worries and to reap the positive effects of social interaction. Consider therapy or counseling to discuss deeper, more intense issues. ■

28 CancerHealth WINTER 2019 cancerhealth.com

10 STRESS RELIEF TIPS 1

Practice mindfulness. Meditation and prayer can be powerful natural sedatives.

2

Be aware. Recognizing signs of stress can help you identify its source and how to ease it.

3

Eat well. Your body requires nourishment to stay strong.

4

Keep busy. Distract yourself with puzzles, reading or crafts.

5

Move your body. A walk or some yoga can help calm your mind.

6

Ask for help. Talk to your medical team and lean on loved ones.

7

Socialize. Visit friends, volunteer, take a class or attend an event.

8

Keep a journal. Get your thoughts out of your head and onto paper.

9

Be kind to yourself. Give yourself permission to experience all the emotions you feel.

10

Rest. Don’t push yourself too hard, and get enough sleep.

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HOW TO

YOUR BODY YOUR HOPE Your immune system may be the key to beating cancer. lmmunotherapy, a new approach to cancer treatment, is bringing hope to cancer survivors everywhere. lmmunotherapy works by empowering your body’s own immune system to correctly identify and eradicate cancer cells. This approach has been used to effectively ďŹ ght many types of cancer, with new research leading to greater hope each day.

Speak with your doctor and visit standuptocancer.org/immunotherapy to learn if immunotherapy may be right for you.

Jimmy Smits, SU2C Ambassador Photo By: Timothy White

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

This Public Service Announcement was made possible by a charitable contribution from

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GOOD STUFF

BY MEAVE GALLAGHER

GIFTS GALORE Ideas to make the season bright

A mix of personal memoir and history lesson, Cancer Crossings: A Brother, His Doctors, and the Quest for a Cure to Childhood Leukemia (ILR Press, $24.95) is Tim Wendel’s account of his brother Eric’s experience with acute lymphoblastic leukemia in the mid-1960s and the efforts of a team of doctors at Roswell Park Comprehensive Cancer Center in Buffalo to improve its 10 percent survival rate.

Today, thanks in part to their research, the survival rate is 90 percent.

Cancer and its treatment are stressful, whether it’s you or a loved one going through it. Let the Moon Organics Relax Bag ($29) relieve some of that stress.

The combo, which includes lemongrass and lavender essential oil, skin-softening butter and a sachet filled with French lavender blossoms, lets you indulge in soothing aromatherapy anytime, anywhere.

To combat stomach-churning side effects, Queasy Drops ($5.95, 21 pieces) are a must. When the inventors of Preggy Pops discovered that their product for morning sickness also was being used by people suffering from other kinds of nausea, they adapted their formula of essential oils and classic stomach soothers like ginger, cola and papaya to make a hard candy for everyone. Queasy Drops help relieve dry mouth and come in sugar-ful and sugar-free varieties.

One way to combat hair loss related to cancer treatment is EES—Essential Eyebrow Solution (1 oz., $90), which uses black cohosh root to support eyebrows that are thinning as a result of chemotherapy or other causes. Clinically tested, EES makes eyebrow hairs appear fuller and thicker.

A 1-ounce bottle lasts three months.

Getting treated for cancer—or being someone’s treatment buddy— can be tedious and exhausting. At the next hours-long chemo session, try propping up your tablet, e-reader or old-school book or magazine on the iBeani Tablet Stand ($27). It’s lightweight, sturdy, easily adjustable, machine washable and holds tablets of any size. No matter how you’re keeping busy during treatment, the iBeani can help ease hand, arm, neck and eye strain.

30 CancerHealth WINTER 2019 cancerhealth.com

BY MEAVE GALLAGHER

RESOURCES

Clinical Trials CLINICAL TRIALS ARE FOR EVERYONE, FROM THE NEWLY diagnosed to those who’ve exhausted other treatment options.

Ask your medical team about available trials, and consult the following list to get started.

AMERICAN CANCER SOCIETY cancer.org The “How Do I Find a Clinical Trial That’s Right for Me?” guide breaks down study search criteria, how to evaluate a trial, costs and insurance coverage.

BREAST CANCER TRIALS breastcancertrials.org This nonprofit trial-matching service finds options for those undiagnosed but at high risk, those who have already completed treatment and those with metastatic disease.

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CANCER RESEARCH INSTITUTE app.emergingmed.com/cri/home CRI, which focuses on immunotherapy clinical trials, has a searchable database and personal trial navigation service that are available online or by phone at 855-216-0127.

CANCER SUPPORT COMMUNITY cancersupportcommunity.org CSC’s trial-matching service is available online or by phone at 888-793-9355. The program helps English and Spanish speakers make decisions about treatment at any stage.

CENTERWATCH centerwatch.com This global database of active

industry-sponsored trials, is sorted by location and condition.

trials by condition, location, study type and more.

CLINICALTRIALS.GOV clinicaltrials.gov The National Library of Medicine maintains a database of publicly and privately funded clinical studies spanning all medical conditions, including cancer.

NATIONAL CANCER INSTITUTE cancer.gov Search the database of active NCI-supported studies, find clinical trials, chat live or access the phone help line (livehelp. cancer.gov or 800-422-6237).

EMERGINGMED app.emergingmed.com This confidential matching, referral and navigation service is designed for patients, caregivers and physicians. Search the database or request a call from a trial navigator to get matched to trials.

NATIONAL COMPREHENSIVE CANCER NETWORK nccn.org Search for clinical trials funded by the NCCN Oncology Research Program at its 27 member institutions across the United States, all of which are NCI-designated cancer centers.

FIGHT COLORECTAL CANCER trialfinder.fightcrc.org Fight CRC staff and research advocates curate and review the Late-Stage MSS-CRC Trial Finder.

ONCOLINK app.emergingmed.com/Onco Link/home OncoLink has trial information for patients, families and providers.

Call 800-474-9892 or search its database, which is hosted by EmergingMed.

LIVESTRONG FOUNDATION livestrong.org Complete an online request form or call 855-220-7777 to be matched with a personal, confidential cancer navigator.

LUNGEVITY FOUNDATION clinicaltrials.lungevity.org Sort this national database of hundreds of lung cancer clinical

TRIALS TODAY trialstoday.org As part of ResearchMatch, Trials Today uses a questionnaire and searchable database to match people who want to participate in studies with researchers at academic institutions.

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CancerHealth 31

LIFE WITH CANCER

BY ROGER PEBODY

I Wish I’d Had the Vaccine 2017 WAS A CRAPPY SUMMER and maybe it didn’t have to be that way.

On the day after my 46th birthday, I received my first dose of chemotherapy and my first radiation session for oropharyngeal cancer caused by human papillomavirus (HPV).

Every weekday for the next six weeks, I was back at the hospital for more radiation, held immobile on the bench by a tightfitting mask that ensured the beams were aimed at the tumor and missed as much healthy tissue as possible.

But there was collateral damage, despite the radiologists’ best efforts.

Ulcers soon erupted on my tongue and in my throat, making eating more painful each day.

My partner became increasingly expert at concocting bland, slippery and calorie-dense dishes for me. He used all his charm, persuasion and patience to get me to eat despite the pain. As treatment progressed, I became increasingly tired.

Although I was able to go in to work for a few hours a day at first, after the third week, most of the time that I wasn’t at the hospital was spent lolling on the sofa.

I know that as cancer treatment stories go, I had it easy.

What’s more, HPV-related oral cancers often respond well to treatment. The six-week course was successful, and my oncologist thinks the risk of recurrence is so low that now I have followup visits only once a year.

But still, it was a pretty intense experience—a close brush with

Roger Pebody receiving chemotherapy for oral cancer in the summer of 2017

mortality in my mid-40s. I would have much preferred to do something else with the summer of 2017. I would have much preferred to have been vaccinated against HPV, which might have saved me from going through this experience.

32 CancerHealth WINTER 2019 cancerhealth.com

In addition to mouth and throat cancer, HPV vaccination can also prevent anal, cervical and other types of cancer. The vaccine is most effective when it is given at a young age, ideally before having sex for the first time. That’s why vaccination programs focus on 11- and 12-year-olds. Although it used to be recommended only up to age 26, the Food and Drug Administration recently extended approval for women and men up to age 45 (see page 4).

I recognize there’s no certainty that vaccination would have prevented my cancer. Almost all adults catch some of the more than 100 types of HPV at one point or another.

When the first vaccine was introduced, I was in my 30s, so it’s possible I already had the HPV type that went on to cause my cancer. The newest vaccine protects against nine types of HPV. While I almost certainly had some of them, perhaps I didn’t have the one that caused all the trouble.

I’d like to think that had a health care provider offered me the HPV vaccine at some time during the previous decade, I might have enjoyed the summer of 2017 quite a bit more. ■

COURTESY OF ROGER PEBODY/JANE MATTHEWS

Roger Pebody is a medical journalist and the managing editor of aidsmap.com.

He lives in London with his husband, Jean-Michel.

SURVEY

❑ CAR-T therapy ❑ Cancer vaccines or other immunotherapy ❑ Therapies for managing side effects ❑ Other (please specify): ________________

CLINICAL TRIALS

6

If yes, what motivated you to participate?

(Check all that apply.) ❑ Access to cutting-edge therapies ❑ Existing treatments did not work or had stopped working ❑ Existing treatments caused too many side effects ❑ Encouraged to participate by members of medical care team ❑ Access to quality care at a leading medical center ❑ Care and monitoring offered at no cost ❑ Wanted to advance scientific knowledge ❑ Wanted to help other people with cancer

7

If you haven’t participated in a trial, have you ever talked with your care team about doing so? ❑ Yes ❑ No

8

What year were you born? __ __ __ __

9

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

Joining a clinical trial can be a good way to gain access to promising experimental treatments, but it’s important to weigh the potential risks and benefits. Cancer Health wants to know about your experience with clinical trials.

1

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

2

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

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3

What types of treatment have you received?

(Check all that apply.) ❑ Surgery ❑ Radiation therapy ❑ Traditional chemotherapy ❑ Hormone or endocrine therapy ❑ Targeted or precision therapy ❑ Immunotherapy ❑ Other (please specify): ________________

4

Have you participated in a clinical trial of an experimental cancer treatment? ❑ Yes ❑ No

5

If yes, what type of treatment was studied in the trial? ❑ Traditional chemotherapy ❑ Hormone or endocrine therapy ❑ Targeted therapy ❑ Checkpoint inhibitors

10 What is your ethnicity? (Check all that apply.) ❑ American Indian or Alaska Native ❑ Arab or Middle Eastern ❑ Asian ❑ Black or African American ❑ Hispanic or Latino ❑ Native Hawaiian or other Pacific Islander ❑ White ❑ Other (please specify): ________________ 11 What is your household income? ❑ Less than $25,000 ❑ $25,000–$49,999 ❑ $50,000–$99,999 ❑ $100,000–$149,999 ❑ $150,000–$199,999 ❑ $200,000 or more 12 What is your ZIP code? __ __ __ __ __

Please fill out this confidential survey at cancerhealth.com/survey or mail it to: Smart + Strong, ATTN: Cancer Health Survey #4, 212 West 35th Street, 8th Floor, New York, NY 10001

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

100% of donations go to cancer research

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