When you’re living with a myeloproliferative neoplasm (MPN), a rare, chronic blood cancer, you may say that you’re fine—even when physical and emotional symptoms are affecting your quality of life. But when you don’t discuss how your MPN makes you feel, you miss the opportunity to get the care and support you may need from friends, family and especially your MPN Healthcare team.
Fine is not enough for your MPN journey.
MPNs are progressive diseases, which means they can change or get worse over time. That’s why it’s important to speak up and spell out how your MPN affects you. It’s an effective way to take an active role in your ongoing care.
Watch real patient stories, plus explore helpful MPN communication tools and resources at FineIsNotEnough.com/ patientstories
Cancer Health Stories
Read the firstperson stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories
Basics
Whether you’re newly diagnosed or a long-term survivor, check out our Basics section on cancer treatment, how to manage side effects and more. cancerhealth.com/basics
Science News
Learn about the latest treatment advances, cure research and conference news. cancerhealth.com/science-news
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 A STAR IS REBORN
Terminal brain cancer prompted Broadway performer Catherine Wreford Ledlow to return to the stage. BY JENNIFER COOK
20 WHAT TO EAT DURING CANCER TREATMENT
For people dealing with cancer, there is little specific dietary guidance—but new evidence is emerging. BY
4 From the Editor More Than Meds
6 News
Alcohol and cancer | colorectal screenings | celebrity diagnoses | #ThisIsMBC | prior authorization
8 Care & Treatment Advances in breast cancer | blood cancer news | newly OK’d meds | exercise and the gut microbiome | promising cancer vaccines
10 Basics Metastatic breast cancer
13 Voices Hodgkin lymphoma thriver Talaya Dendy taps into the emotional side of cancer through art.
BOB BARNETT14 A Kidney Cancer Diary
Chase Griffith joined a clinical trial when his cancer advanced.
26 Life With Cancer
Wanda Zimmer’s “perfect stranger”
27 Resources Information on clinical trials
28 Your Team A clinical research coordinator
30 Good Stuff
Stylish, soothing treatment treats
32 Solutions
Cancer-related weight gain
33 Reader Survey
Share your thoughts about us.
If you smoked, you may still be at risk, but early detection could save your life.
PILLS, INFUSIONS, CHEMO, CAR-T therapy, Mohs surgery, checkpoint inhibitors, radiation. The list of cancer treatments continues to grow. But achieving optimal outcomes entails more than taking meds—and that’s the topic our spring 2023 issue of Cancer Health explores. A few highlights:
Almost everyone with cancer wants to know what to eat while on treatment. As our editor-at-large, Bob Barnett, reports, there is little specific dietary guidance—but new research is emerging. Go to page 20 for more details, including the promise of precision nutrition—diets tailored to individual genomic profiles to starve tumors.
What about exercise? Our Care & Treatment section, on pages 8 and 9, rounds up research on working out, along with news from major annual conferences on breast and blood cancers; plus, it features a summary of newly approved treatments.
Clinical trials offer access to experimental therapies. Chase Griffith enrolled in such a trial when his kidney cancer returned and metastasized. To learn what happened next, read his Kidney Cancer Diary on page 14.
“When patients are enrolled in a clinical trial, they get more monitoring than is the standard of care,” says Kami Pullakhandam, a clinical research coordinator at UCSF who is profiled
for Your Team. Turn to page 28 to learn more about her role in cancer care, and see Resources on page 27 for information on clinical trials. Not everyone with cancer has the option of being cured. Catherine Wreford Ledlow, a former Broadway dancer and our cover subject, was diagnosed with terminal brain cancer nearly 10 years ago. As she explains, “I don’t even get to say ‘Five years? Yep, I’m in remission.’ You can’t ever be in remission.” But you can be in the spotlight! She returned to the stage and, with her best friend, Craig Ramsay, even won last year’s Amazing Race Canada. Turn to page 16 for an inspiring tale of intense rehearsals and resilience. Amazing, indeed!
EDITOR-IN-CHIEF
Trent Straube
MANAGING EDITOR
Jennifer Morton
SCIENCE EDITOR
Liz Highleyman
EDITOR-AT-LARGE
Bob Barnett
NEWS WRITERS
Sukanya Charuchandra; Laura Schmidt
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; 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
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 COORDINATOR
Sarah Pursell
SALES OFFICE 212-938-2051 sales@cancerhealth.com
BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com
CDM PUBLISHING, LLC
CHIEF EXECUTIVE OFFICER
Jeremy Grayzel
CONTROLLER
Joel Kaplan
Cancer Health (ISSN 2688-6200) Issue No. 21. Copyright © 2023 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.
TRENT STRAUBE
Editor-in-Chief
trents@cancerhealth.com Twitter: @trentonstraube
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.
Before you order another round, consider this: “All types of alcoholic beverages, including wine, increase cancer risk,” says Andrew Seidenberg, PhD, MPH, a researcher with the National Cancer Institute (NCI). Most Americans aren’t aware of this link, he and his team found in a recent study. What’s more, many incorrectly thought beer and hard liquor presented a cancer risk but not wine.
Each year, about 75,000 cancer cases and 19,000 cancer deaths are estimated to be linked to alcohol in the United States, according to the NCI. Worldwide, about 4% of cancer cases in 2020 were associated with alcohol.
Alcohol causes cancer because it contains ethanol, which is a carcinogen that can damage DNA, increase estrogen (known to promote breast cancer) and cause esophageal, mouth and throat and liver cancers. (Of note, a separate study found that abstaining from alcohol improves outcomes for folks with alcohol-related cirrhosis, or scarring of the liver, which shows it’s never too late to cut back on the booze.)
The emergence of the COVID-19 pandemic caused many Americans to consume more alcohol, so it’s even more vital now to raise awareness that it can cause cancer.
CANCER HEALTH POLL:
Did
Early screening is one of the best ways to reduce colorectal cancer rates and death. But a recent study found that men who embrace traditional ideals of masculinity and gender norms were less likely to get screened or ask for help, which was perceived as a weakness. The study, led by Charles Rogers, PhD, MPH, of the University of Utah, also found lower screening rates among men with negative attitudes toward the medical profession. Addressing these psychosocial issues, they wrote, would help lower health disparities among racial and ethnic groups.
Since about 2019, the recommended age for starting colorectal screenings has dropped from 50 to 45. Data comparing colonoscopies between October 2017 and August 2021 found a modest increase in screening of younger people but that first-time colonoscopies were mostly performed among 50- to 54-year-olds.
But there’s an easier, faster and cheaper way to get screened: fecal tests that involve mailing in a stool sample. A recent survey found that most Americans preferred a regular fecal immunochemical test (FIT), every one to three years over a colonoscopy every 10 years.
In January, tennis icon Martina Navratilova revealed that she had been diagnosed with Stage I throat cancer and an unrelated breast cancer. The latter was discovered during exams for the throat cancer, which can be caused by human papillomavirus (HPV). “This double whammy is serious but still fixable,” Navratilova said in a statement. “It’s going to stink for a while, but I’ll fight with all I have got.” HPV is a sexually transmitted virus often associated with cervical cancer. A vaccine is available and recommended around ages 11 to 12. It can be administered later but preferably before a person is sexually active.
left:
• U.S. Representative Jamie Raskin (D–Md.) is undergoing chemo-immunotherapy for diffuse large B-cell lymphoma. He noted the “prognosis for most people in my situation is excellent after four months of treatment.”
• When iconic ’80s group Duran Duran was inducted into the Rock & Roll Hall of Fame in late 2022, guitarist Andy Taylor wasn’t present; his bandmates revealed he is battling Stage IV metastatic prostate cancer. Watching the ceremony on TV, Rage Against the Machine bassist Tim Commerford was inspired to go public about his own experiences with prostate cancer in hopes of motivating others to get screened.
Each year since 2017, the #ThisIsMBC campaign has launched a new initiative to educate, inspire and raise awareness about metastatic breast cancer (MBC). The campaign is a collaboration between global pharmaceutical company Eisai and METAvivor, a nonprofit group dedicated to MBC advocacy. Titled “Imagine,” this year’s initiative spotlights 12 people with MBC. Through videos and portraits, they share both their struggles and hopes as they imagine a future. “I can imagine that, with the positive energy and the love that I’m surrounded by, there will be people who have the energy and the desire to help those of us who are fighting Stage IV breast cancer,” says campaign participant Cheryl Law, MD. “I can imagine that my children will see me grow as I see them grow. I can imagine that I can get through this.”
A survey from the American Society of Clinical Oncology (ASCO) backs up what we’ve known for years: Prior authorization is more than a massive inconvenience—it’s actually harmful. The process of requiring documented approval from insurers before a health service can be provided delays needed
treatment (96% of surveyed doctors said), forces patients onto second-choice therapy (93%), increases out-of-pocket costs (88%), impacts disease progression (80%) and can even lead to death (36%).
“Large numbers of patients face indefensible delays or denials of cancer care,” said
ASCO board chair Lori J. Pierce, MD. The group advocates to improve the prior authorization process and protect patient health. “It would be unconscionable,” Pierce says, “for policymakers to leave current prior authorization requirements and their effects on people with cancer unexamined.”
Researchers at the San Antonio Breast Cancer Symposium, held in December, reported promising news about several advances in treatment. The antibody-drug conjugate Enhertu (trastuzumab deruxtecan) continues to shine. Two studies showed that the drug improves overall survival for women with previously treated HER2-positive metastatic breast cancer, while a third study showed that neoadjuvant, or presurgery, treatment for people with HER2-low breast cancer yielded good response rates.
For HER2-negative breast cancer, researchers reported that adding capivasertib, an experimental AKT inhibitor, to the hormone therapy fulvestrant (Faslodex) more than doubled progression-free survival for patients with advanced disease. The RIGHT Choice study suggested that the CDK4/6 inhibitor Kisqali (ribociclib) plus hormone therapy may be a more effective and better tolerated initial treatment option for young women with aggressive HER2-negative metastatic breast cancer.
Turning to earlier breast cancer, some women with two or three tumors in the same breast—who are traditionally advised to undergo a mastectomy—had good outcomes with breast-conserving lumpectomy followed by radiation. The recurrence rate was 3%, similar to the rate for women with only a single tumor. Another study found that genetic profiling could identify patients who may be able to safely skip radiation after breast-conserving surgery. The gene profile, dubbed POLAR, may “help mitigate toxicities and improve quality of life for many patients,” says Per Karlsson, MD, of the University of Gothenburg in Sweden.
Finally, results from the POSITIVE study showed that women with breast cancer who paused hormone therapy to get pregnant had recurrence rates similar to those of women who did not pause treatment, and many went on to deliver healthy babies.
The American Society of Hematology annual meeting, focused on blood cancers, also took place in December. Bispecific antibodies—which attach to both cancer cells and T cells, engaging the T cells to attack the cancer—were the star of the show. Two of them, Tecvayli (teclistamab) and Lunsumio (mosunetuzumab), were recently approved. Others in the pipeline include epcoritamab for follicular lymphoma and diffuse large B-cell lymphoma, glofitamab for advanced large B-cell lymphoma and talquetamab for multiple myeloma. Another promising approach attaches a bispecific antibody to natural killer cells from umbilical cord blood.
Other studies challenge accepted treatment practices. In some cases, “giving less therapy and being less restrictive is actually better for patients, or at least no worse,” says Mikkael Sekeres, MD, of the Sylvester Comprehensive Cancer Center in Miami. One study showed that patients with relapsed or refractory acute myeloid leukemia did not gain extra benefit from intensive chemotherapy before a stem cell transplant. Another showed that some people with mantle cell lymphoma who are treated with Imbruvica (ibrutinib) can skip stem cell transplantation altogether.
A third study found that cancer patients undergoing stem cell transplants don’t need to stick to a restrictive neutropenic diet that excludes unpasteurized or fermented dairy products, raw or lightly cooked meat and seafood, many fresh fruits and vegetables and restaurant meals.
“A protective diet is an unnecessary burden for our patients because it impairs quality of life without reducing infection incidence,” says Federico Stella, MD, of the Università degli Studi di Milano in Italy.
Here are the latest new cancer drugs approved by the Food and Drug Administration:
• Adstiladrin (firadenovec) for bladder cancer
• Elahere (mirvetuximab soravtansine) for ovarian cancer
• Imjudo (tremelimumab) for liver cancer
• Jaypirca (pirtobrutinib) for mantle cell lymphoma
• Krazati (adagrasib) for non-small-cell lung cancer
• Lunsumio (mosunetuzumab) for follicular lymphoma
• Lytgobi (futibatinib) for cholangiocarcinoma
• Orserdu (elacestrant) for advanced breast cancer
• Rezlidhia (olutasidenib) for acute myeloid leukemia
• Tecvayli (teclistamab) for multiple myeloma
Physical activity may lead to a healthier gut microbiome, and the microbiome may in turn affect motivation to exercise. Analyzing stool samples collected before surgery, researchers found that colorectal cancer patients who engaged in regular moderate exercise had a greater diversity of bacteria in their intestines and reduced inflammation compared with those who were inactive. “Our study suggests that nobody needs to be an athlete to get the benefits,” says Caroline Himbert, PhD, of the University of Utah. In a second study, researchers first measured how much mice voluntarily ran on a wheel and how long it took for them to become exhausted when running on a treadmill. The makeup of the mice’s gut microbiome predicted exercise capacity better than genetic, metabolic or behavioral factors. When the mice were given antibiotics to eliminate gut microbes, they ran less and became exhausted sooner. Fatty acid amides (FAAs) produced by gut microbes may stimulate sensory neurons that increase levels of dopamine—a neurotransmitter that provides a feeling of reward—and adding FAAs to the mice’s diet restored exercise capacity.
A customized vaccine using the same mRNA technology as COVID-19 vaccines may help treat people with cancer. To create personalized vaccines, scientists sequence a sample from a patient’s tumor and identify which neoantigens (abnormal proteins) are most likely to elicit an immune response. In the KEYNOTE-942 trial, people with advanced melanoma who received nine doses of Moderna’s experimental cancer vaccine (mRNA-4157/V940) plus Merck’s checkpoint inhibitor Keytruda (pembrolizumab) after surgery had a 44% lower likelihood of disease recurrence or death than those who got Keytruda alone.
Unlike custom-made vaccines, those that target common cancer antigens could be available off the shelf—for example, an experimental DNA vaccine that trains the immune system to recognize HER2 proteins on breast tumors. In a Phase I study, women with locally advanced or metastatic breast cancer who received the optimal dose of the vaccine produced HER-2-specific cancer-fighting T cells, and they fared better than expected: 80% were still alive 10 years later. A Phase II trial is underway. “I have high hopes that we’re close to having a vaccine that can effectively treat patients with breast cancer,” says study investigator Mary Disis, MD, of the University of Washington.
For more care and treatment news: cancerhealth.com/science-news
Treatment can improve quality of life for people with advanced breast cancer.
BREAST CANCER CAN OFTEN be cured when it is detected at an early stage, but some people experience disease progression despite treatment, and others are diagnosed after their cancer has already spread to other parts of the body, known as Stage IV, or metastatic breast cancer (MBC).
Experts estimate that around one quarter of women diagnosed with early breast cancer will progress to MBC, and about 10% have MBC as their initial diagnosis. Breast cancer is uncommon among men, but they are more likely to be diagnosed at a later stage. While it can’t be cured, some people live with MBC for years; the five-year survival rate is around 25%.
Cancer cells can break away from the original tumor and spread through the bloodstream or lymphatic system. MBC often spreads to the bones, liver, lungs or brain. Breast cancer that spreads to the liver, for example, is still considered breast cancer— not liver cancer.
Breast cancer is classified by the receptors on tumor cells. A majority of breast tumors carry estrogen or progesterone receptors and can be treated with hormone (endocrine) therapy. Others express a receptor called HER2 and can be treated with HER2 inhibitors. Triplenegative breast cancer doesn’t express any of these receptors, so it is harder to treat and more likely to spread. People with inherited BRCA mutations are more likely to develop MBC.
Unlike early breast cancer, the goal of MBC treatment is to prolong survival and maintain a good quality of life, rather than to completely eradicate it. Treatment depends on how advanced the cancer is and whether it has genomic biomarkers showing that certain medications are likely to work.
Surgery and radiation therapy may be used to shrink tumors and relieve side effects, such as pain due to bone metastasis.
Most people with MBC receive systemic medications that affect the whole body. Hormone therapy, such as aromatase inhibitors and selective estrogen receptor degraders, may be used to treat estrogen-receptor-positive MBC. Traditional chemotherapy works by killing fast-growing cells.
Targeted therapy works against cancer with specific characteris-
tics. Antibody-drug conjugates, such as Enhertu (trastuzumab deruxtecan) and Trodelvy (sacituzumab govitecan), use antibodies to deliver potent drugs directly to tumors. CDK4/6 inhibitors—for example, Ibrance (palbociclib), Kisqali (ribociclib) and Verzenio (abemaciclib)— interfere with a kinase protein needed for cell division. PARP inhibitors, including Lynparza (olaparib) and Talzenna (talazoparib), block proteins that repair damaged DNA in people with BRCA mutations.
Immunotherapy helps the immune system fight cancer. Some tumors can turn off immune responses against them.
Checkpoint inhibitors—Keytruda (pembrolizumab) and Jemperli (dostarlimab) are approved for MBC—can restore T cells’ ability to destroy cancer cells.
Hormone therapy, chemotherapy and targeted therapies can stop working, and immunotherapy doesn’t work for everyone. Because treatment is continually evolving, it is often possible to move on to new medications if the current ones are no longer effective. Integrative therapies, such as acupuncture, may help relieve symptoms or side effects. MBC treatment continues to improve, and several new therapies are currently under study. Ask your doctor whether a clinical trial might be a good option for you. ■
I HAVE ALWAYS LOVED THINGS THAT ARE DIFFERENT, ONE-OFa-kind, colorful and creative. Color is life! I am always inspired when I visit art museums and attend plays. They speak to my soul, whispering, “Don’t forget to nurture this side of you.”
That is exactly what happened while I was navigating life and work. I am an analytical person by nature, and that side of me thrived at my job. However, my artistic and creative side yearned for attention.
That was usually a sign that I needed to take a step back from reality, have some downtime and recharge. Unfortunately, it would take a cancer diagnosis for me to stop, drop everything and tap back into that creative side, where my true, deep emotions reside.
During my cancer journey, I had to become an expert at alternating between the analytical and creative at the drop of a hat. Actually, they worked pretty well together!
As someone who was never sick, other than a cold or the flu, had never broken a bone or stayed a night in the hospital, I was shocked when I received the news that I had Hodgkin lymphoma. I knew the lump on the left side of my neck was something, but I never imagined it was cancer!
I took the entire weekend to feel the words of my diagnosis and work through the emotions connected to them. I was sad, angry, confused and afraid. You name it! Those emotions
Right: Talaya Dendy; top: Spoonbridge and Cherry, a sculpture in Minneapolis
were my personal guests for the weekend, and we all sat with each other and wrapped our arms around one another.
I was led to connect with them. I had no idea what I was doing at the time, but my spirit said that connecting with my emotions was what I needed. I am so glad I listened and took action. It was the first gift I received during that part of my life with cancer.
Spending time with my emotional friends gave me strength to start the new week by stepping into my power and begin a journey like I had never experienced.
During cancer treatment, I took some time off from work, which allowed me to focus on healing and the emotional side of cancer—not just the medical and physical sides, which typically receive the most attention.
One of the many ways I did that was by spending time with my mom and taking in art. The Minneapolis Sculpture Garden and Walker Art Center were a couple of the places that helped me put cancer on the back burner for a short time.
Seeing the big Spoonbridge and Cherry sculpture made me laugh because it reminded me that sometimes the curveballs in life are big and over the top. However, unbeknownst to us at the time, they have a cherry on top.
What was I going to get from cancer?
When you feel heavy and weighed down, remember these words by Pablo Picasso: “Art washes from the soul the dust of everyday life.” ■
Chase Griffith, 46, lives in Dallas with his wife and two sons. He has metastatic chromophobe renal cell carcinoma.
I WAS BORN IN OKLAHOMA. I MET MEGHAN in college, but we only started dating seriously in 2007, when we both wound up in Dallas. We got married in 2008, had Fletcher in 2011, Harrison in 2013. I was a lawyer for 10 years but quit to work for a friend’s financial start-up. I was happy. Things were going as well as you could script in a movie.
December 2018
I had had mild abdominal pain on my left side. My PCP does a physical exam and scans for kidney stones. It was diverticulosis on the left side, but he found a 6 centimeter mass on my right kidney. He calls that night to tell me he thinks it’s kidney cancer. My wife found Solomon Woldu, a urologist who specializes in malignancies, at UT Southwestern Medical Center. I get an MRI. He tells me it looks like kidney cancer but can’t confirm without a biopsy, which is scheduled for the day after Christmas; a nephrectomy (surgical removal of a kidney) is scheduled for January if the biopsy is positive.
January 2019
Biopsy results are mixed. I consider canceling surgery, but my friend, a retired pediatric oncologist, urges me to move forward, as did Dr. Woldu. Pathology results reveal it’s a rare form of kidney cancer—chromophobe renal cell carcinoma. It was Stage III—the tumor had extended into kidney fat. Nephrectomy is a success. I am declared cancerfree, with scans ordered for every three months. We didn’t tell the kids it was cancer. They were 5 and 7.
Scans show no signs of cancer for two years. It’s an odd feeling. I know I’d had cancer, but it was just
surgery, like knee surgery. One day in 2020, driving in the car, a story about cancer came on the radio. Meghan gives me a look that meant: “If you’re going to tell the kids, now is a good time.” So I say, “Remember when I had that kidney removed? That was actually cancer. We were told it was cured.”
April 2021
Abdominal MRI results show a small liver lesion. Dr. Woldu calls that evening. He mentions a variety of treatment options if it is metastasis. We schedule a biopsy. Phone calls to the family that evening are excruciating. We try to keep things normal over Easter weekend. We tell Dr. Woldu that if it’s metastatic, we want to get Hans Hammers, a renowned kidney cancer oncologist at UT Southwestern. He says we can have whoever we want. We also set up next-generation genetic sequencing—a close family friend works for the company that does it. [Editor’s note: This technology allows for DNA to be tested quickly and inexpensively to see whether there are tumor mutations that might be drug targets.]
We get a brain MRI, which fortunately shows no metastasis. A couple of weeks later, I wake up with severe abdominal pain. The CT scan shows no appendicitis but new nodules that hadn’t shown up on the MRI. Biopsy results were benign. But Dr. Woldu said, “Don’t start popping champagne yet.” He thinks it’s a false negative.
July–September 2021
Scan shows growth. A new biopsy shows it is
metastatic chromophobe renal cell carcinoma. Now, I really feel like a cancer patient. We really started researching. It was heartbreaking: no treatments, no research. I continue to work. We told the kids that the cancer was back. I don’t want them to be scared but also don’t want to hide anything from them.
Dr. Hammers recommends we wait for a threedrug clinical trial opening in the fall—two immunotherapy meds and a targeted therapy. One day in spring, in the car, getting a Slurpee, my youngest asks, “Hey, Dad, are you going to die from your cancer?” I’m not going to say everything will be fine. I tell him that we are getting the best treatment possible with the best doctors possible. I remind them that I am doing well today, and no one can truly know what the future holds. Our focus should be on giving thanks for today.
During this time, we learn that the Kidney Cancer Research Alliance (KCCure) has a patientdriven Chromophobe Research Grant Award of $50,000. We make our first donation.
The first infusion in late October goes fine, as does the second one on November 10. But by Thanksgiving, I start feeling bad, cold all the time, can’t sleep, heart racing. Lab work shows my liver enzymes are off the charts. My doctors tell me that my immune system is attacking my liver—a side effect of immunotherapy. They stop all treatment, prescribe steroids, suggest hospital admission.
Our youngest son’s birthday is the next day. Dr. Hammers says, “Go home and spend his birthday with him.” I start 200 milligrams of prednisone the next day. He warns me that steroids are very altering, not to make any decisions. I can’t sleep, am hungry like a 13-year-old.
Liver enzymes start to come down. Since steroids make me immunocompromised, given COVID, we decide to take our boys out of in-person school until it’s less dangerous.
For more first-person essays, go to: cancerhealth.com/stories
I taper steroids, restart the targeted therapy. But when I go down to 10 mg of steroids, my liver inflammation comes back, requiring hospitalization, high steroid doses and a new immunosuppressant. I am days away from liver failure, likely death.
While I’m in the hospital, my wife reaches out to KCCure’s Dena Battle, who puts us in touch with Lisa Henske, an oncologist at Brigham and Women’s Hospital, who spends an hour with us on a Zoom call. She sends us a very small study out of Europe with nine chromophobe patients who have good results with two targeted therapies. She suggests we see Dr. Toni Choueiri, an oncologist at the Dana-Farber Cancer Center in Boston. Within hours, we receive a text from Dr. Henske that Dr. Choueiri will see me in February.
We start the first drug of new treatment on March 3. We send our children back to in-person school. We decide to have a fundraiser for the KCCure Chromophobe Research Grant Award. Our goal is $25,000 over three weeks. We raise $20K in 24 hours, nearly $60K overall. Donations of $100 and $200 came from all over the country. We are blown away. In April, I add the second drug to my treatment.
June 2022
Tumors have shrunk 20% across the board, no new tumors. I tolerate treatment well and taper off all immune suppressants. We take a family vacation.
Tumors are stable. I feel great physically. I have a few lingering side effects, such as high blood pressure and cholesterol, so I have medicine for that. I continue to work. I’m coaching football.
My faith has strengthened through this journey. Through the guidance of a dear friend, I have discovered much hope and understanding through the teachings of Jesus Christ.
The only way to get through something like this is to have faith and focus on making the days with my family and friends count. Whether those days are in the hundreds, thousands or tens of thousands, doesn’t matter. Enjoy today. It’s the only one any of us have.
As part of Team Broadway, Catherine Wreford Ledlow won The Amazing Race Canada.
IT
STOP ON
OF The Amazing Race Canada. As they jogged into Vancouver’s gargantuan BC Place stadium, race partners Catherine Wreford Ledlow, 42, and Craig Ramsay, 45, realized they were the first to arrive. “Oh, my gosh…oh, my God…we did it!” Ramsay cried out.
Holding hands, they rushed to the platform, a tiny island in a sea of artificial turf, where the eliminated contestants and the show’s host, Jon Montgomery, were waiting to greet them. Amid clapping and cheering, Wreford Ledlow and Ramsay caught their breath and hugged. “Is this…is this for real?” she asked, looking stunned.
Her shock was understandable. The Canadian duo— dubbed Team Broadway for their roles in hit shows such as Fiddler on the Roof and Chitty Chitty Bang Bang (Ramsay) and Oklahoma! and 42nd Street (Wreford Ledlow)—had just completed The Amazing Race Canada, which had been delayed for nearly three years due to the COVID-19 pandemic. During the odyssey, they had covered over 12,400 miles, crisscrossed five provinces and visited 24 cities. Their win also celebrated another significant achievement: Wreford Ledlow’s pluck and tenacity in working around the challenges of terminal brain cancer.
Back in 2013, Wreford Ledlow was following a different life plan. She had been a musical theater star until injuries led her to hang up her dance shoes. Based in Los Angeles, she ran a mortgage company for three years and later waitressed nights at a high-end sushi restaurant so she could take prerequisites for a nursing degree by day. While in LA she met and married her husband, Joel Ledlow, 49, a martial arts instructor, and they had a son, Elliot, now 12. They subsequently moved to Oklahoma City, where Wreford Ledlow finished her nursing degree and gave birth to their daughter, Quinn, now 9.
In June, five weeks after Quinn’s birth, Ramsay visited Wreford Ledlow to celebrate her 33rd birthday. The two first met at the Royal Winnipeg Ballet School when she was 16 and he was 19, and they’ve been friends since.
During Ramsay’s visit, they were making a video of
Wreford Ledlow doing dips and lifting Quinn in her BabyBjörn carrier. “I said, ‘Craig, we have to stop, my head just hurts too much,’” she recalls.
Ramsay knew something was seriously wrong; his best friend would never stop a workout unless she was in excruciating pain. He made her promise to see a doctor. A bout of dizziness that Sunday night and a call to her midwife the next morning reinforced the urgency to seek medical care.
She headed for the hospital where she had finished her nursing training and had two EKGs to rule out a heartrelated problem. Next, she got a CT scan to see whether her natural birth with Quinn had caused a small brain bleed.
When Wreford Ledlow emerged from the scanner, everyone’s faces were white with shock.
“All these doctors started coming into the room, and they said, ‘You have a mass on your brain, and we need to take it out immediately,’” Wreford Ledlow says. Knowing that she was a nurse, they asked whether she wanted to see the scan. The tumor, on the left side of her head, was bigger than her fist. “My brain was all pushed over to one side.”
The doctors sent her to get an MRI to determine the parameters of the mass.
“I just remember lying there, not moving, with tears going down my face, not knowing what to do and just thinking, This is going to change my life forever,” Wreford Ledlow recalls. “And it did.”
The mass in Wreford Ledlow’s brain was an astrocytoma, the most common type of brain tumor—specifically, an anaplastic type, which tends to be fast-growing. Surgery to remove the tumor was scheduled for early July. The hours-long operation had to be performed while she was awake to avoid damaging her brain’s speech center, which the tumor impinged upon. Still, she was unable to speak right after the operation and had almost daily speech therapy for about six months.
“A week after surgery, I would talk like this: ‘I (long pause) want (long pause) to (long pause)….’ And I couldn’t write anything. I could see what I wanted to write, but I was writing jibber jabber,” Wreford Ledlow says.
Six weeks post-op, she underwent six weeks of chemotherapy and radiation at a center close to her home in Oklahoma City—which was fortunate because the risk of seizures meant she couldn’t drive. Over the next year, after a six-week hiatus, she was given six rounds of four different kinds of chemotherapy—two oral, two intravenous—
which turned her blond hair chestnut brown. She had the last chemo doses in Winnipeg, where she and Joel relocated their family to be near the Wreford clan.
Wreford Ledlow has been on an anti-seizure medication since shortly after her surgery and hasn’t had a seizure in about five years. She goes in for MRIs every three months because the tumor will come back, inevitably, as either another astrocytoma or a glioblastoma.
Given that reality, she asked herself what she wanted to do with the time she had left. “I was like, What can I do that makes me fulfilled? And I thought, I want to perform.”
Memorizing lines and dance steps is an essential part of a performer’s job. Post-surgery, Wreford Ledlow’s shortterm memory loss made returning to the stage more difficult. “I started trying to learn lines, and I couldn’t do it,” she says. Undeterred, she found another way: “I started learning my lines and singing my songs three times a day.”
It’s a practice she continues to this day. And it works because she receives the material way in advance—she is open about her cancer and limitations. During a show, when she goes offstage, she asks what comes next, and stagehands will tell her, “This is where you come on; this is what you do,” she says. “Or I have it written on the side of the stage.” In 2019, in the musical Fun Home at the Royal Manitoba Theater Center, she was even able to play the lead character, Alison, who is an artist, without ever leaving the stage by having the first of her lines for every scene written on a sketchpad.
But on The Amazing Race, nothing was provided in advance. One tap dance number required her to learn four sets of steps. “I could do the steps, but I couldn’t remember the order,” she says. “I think I did it all 10 times. But I got it.” She also jotted clues and details of each day in a notebook, which she credits with helping Ramsay and her win.
One day Wreford Ledlow was speaking with another woman in the waiting room of her oncologist’s office. Their similarities were uncanny. The woman, Carrie, had two kids and was a year older than Wreford Ledlow. And she had an anaplastic astrocytoma. When Wreford Ledlow learned later that day that she had the same type of tumor, she immediately phoned Carrie, and they talked for hours. The conversation helped Wreford Ledlow come to terms with her diagnosis, and the experience convinced her to become an advocate. That led her to the Brain Cancer Foundation of Canada. “I’ll volunteer for anything they ask me to do.” She has given away the football at a Winnipeg Blue Bombers game and sung the national anthem with her kids at a Jets hockey game, and she runs a monthly support group for people throughout the province of Manitoba. Before the coronavirus pandemic, meetings were held in person, but they’re now online, “which is good and bad,” Wreford Ledlow says. On the one hand, getting to in-person gatherings is hard because many who have brain cancer can’t drive. On the other hand, “they forget a lot of things or can’t figure out how to get onto a computer. So we deal with a lot of things like that.”
Wreford Ledlow is driven by the reality that brain cancer has no cure. “I don’t even get to say, ‘Five years? Yep, I’m in remission.’ You can’t ever be in remission.” She’d like to see this disease transformed from a death sentence into a lifelong illness, like diabetes. To spread awareness and raise money, she has embarked on motivational speaking, sharing her cancer journey.
Wreford Ledlow was given two to six years to live when she received her diagnosis. Initially, she thought she would never accept that her cancer was terminal, but her outlook has changed “100%,” she says. “I’m happier now because little things don’t bother me anymore. I don’t really have to do anything. I mean, I have to earn a living, but I do what I love.” She is now approaching her 10th year post-diagnosis. “I always say I’m past my expiration date,” she says, with a characteristic laugh. ■
Research has shown that people with cancer who receive emotional support from friends and family are better able to adjust to the changes wrought by their disease and feel more positive. Their quality of life is often better too.
Catherine Wreford Ledlow considers herself “super lucky” to have the loving help and support of many, including her mother, but none more so than Craig Ramsay, her longtime gay friend, Amazing Race partner and soulmate.
“Craig and I have such a close connection—we know what each other is feeling,” Wreford Ledlow says. “We’re never competing. We just have this way of rooting for each other from the bottom of our hearts. I feel like everyone needs a Craig in their life.”
“As her best friend, I’m there to remind her of how incredible she is,” Ramsay says. “A champion and warrior with every single task that’s in front of her.” During The Amazing Race, they experienced the gamut of feelings together. “Behind closed doors, when we finished one of the pit stops, our emotions would go from being overjoyed to tears of both joy and sadness because we didn’t want it to end.” They also had deep conversations on topics like her wishes for her children’s future. And he felt fortunate to witness her moving beyond some of the limitations imposed by her terminal illness— to function better, improve her vocabulary and communication skills and boost her memory. Now a fitness and wellness author, Ramsay says, “It’s the lesson that we shouldn’t shy away from challenges. We should tackle them to the best of our abilities.”
For people who are newly diagnosed or undergoing active treatment, there is little specific dietary guidance, but new evidence is emerging.
BY BOB BARNETTFOR CANCER SURVIVORS, OVER THE LONG TERM, healthy eating improves quality of life; protects against new cancers, heart disease and diabetes; and in some cases, reduces the risk of recurrence. But when you are undergoing active treatment, the best dietary approach for your particular cancer and type of therapy is still largely an open question.
“You’re diagnosed, you’re getting treatment, what do you eat now?” asks Wendy Demark-Wahnefried, PhD, RD, associate director for cancer prevention and control for the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham and a coauthor of “Exercise, Diet, and Weight Management During Cancer Treatment,” from the American Society of Clinical Oncologists (ASCO). “Unfortunately, the data are really thin.” Indeed, that ASCO guideline concludes that “there is currently insufficient evidence to recommend for or against dietary interventions.”
in Houston and the author of a 2021 study published in the journal Cancer. The healthier the men ate, the less likely their prostate tumors were to become aggressive and potentially need treatment.
portant for prevention, for overall health and for cancer but the window of time you ’ re getting treatment, we can’t make a data It doesn’t mean it’s not import-
Says Demark-Wahnefried, “We know that diet is important for prevention, for overall health and for cancer survivorship, but during the window of time you’re getting treatment, we can’t make a guideline supported by data. It doesn’t mean it’s not important. We just really need more research.”
To remedy that dearth of research, the National Cancer Institute has funded several new clinical studies, but results are still a few years away.
on treatment, the evidence is clearer. active, consuming foods that reflect a pattern and after comof cancer treatment improves
For cancer survivors not currently on treatment, the evidence is clearer. “Being physically active, consuming foods that reflect a healthy dietary pattern and avoiding obesity after completion of cancer treatment improves long-term survival,” concludes the American Cancer Society’s 2022 guideline “Nutrition and Physical Activity Guideline for Cancer Survivors.” It goes on to state that the recommended dietary pattern is “rich in a variety of plant foods, such as vegetables, whole fruits, whole grains and beans/ legumes, but limited in or not including red and processed meats, sugar-sweetened beverages, highly processed foods and refined grain products.”
Among men diagnosed with slow-growing prostate cancer who were under active surveillance, for example, those whose diet more closely adhered to the plant-based Mediterranean diet had “a lower risk of their tumors upgrading over time,” says Justin R. Gregg, MD, an assistant professor of urology at MD Anderson Cancer Center
For many people on active treatment, a plant-based diet remains a good dietary model. It may be particularly important for individuals being treated with immunotherapy. But different diets, such as a very high-fat ketogenic diet or short-term fasting, may be beneficial for certain individuals. Meanwhile, the new field of precision nutrition is harnessing the sophisticated tools of genomics to tailor dietary prescriptions for individuals with specific types of cancer (see the sidebar “Precision Nutrition for Cancer Treatment,” page 24.)
types of cancer (see the sidebar “Precision Nutrition for Cancer page 24.)
inhibitors, the
The can be lifesaving, but don’t work for every patient who is a candidate for them. For some, diet may make a difference.
Checkpoint inhibitors, the most common form of immunotherapy, are powerful medications that unleash the body’s own immune T cells to attack tumors by taking the brakes off their activity. The drugs can be lifesaving, but they don’t work for every patient who is a candidate for them. For some, diet may make a difference.
Melanoma patients who eat a fiber diet, which supports a diverse gut micro-
Melanoma patients who eat a highfiber diet, which supports a diverse gut microbiome, respond best to checkpoint inhibitors, finds Jennifer McQuade, MD, an assistant professor of melanoma medical oncology at MD Anderson. Diverse gut bacteria, she explains, promote immunity and, specifically, anticancer immunity.
“It’s about the diversity of sources of fiber,” she says. “Different fibers stimulate different bacteria. They crossfeed and strengthen the overall microbiome ecosystem. So [this means eating] vegetables and grains and fruits and nuts and seeds and pulses [such as peas, beans and lentils].” She also recommends fermented foods, such as kimchi, yogurt, sauerkraut and kefir, which are rich in a variety of beneficial bacteria. Fiber-rich and fermented foods act synergistically. The benefits aren’t limited to those with melanoma.
“The microbiome plays a role in many cancers, including kidney, breast, lung, pancreatic, colorectal and more,” McQuade says. Checkpoint inhibitor immunotherapy drugs, she notes, have been approved for 15 different kinds of cancer.
“I tell my patients to eat a high-fiber diet,” McQuade continues. She recommends 30 or 50 grams of dietary fiber per day; the American average is 15. She is committed to conducting the kind of studies that could bring this research to the real world. While small studies have shown benefits, randomized trials that might demonstrate improved treatment outcomes from dietary intervention have not yet been conducted. “That’s the kind of data,” she says, “that will bring oncologists to recommend these dietary interventions.”
While a microbiome-friendly diet dovetails nicely with recommendations to eat a plant-based diet, the ketogenic diet is so low in carbohydrates that it makes eating fiberrich fruits and vegetables difficult. It’s very high in fat (as much as 70% of calories), with adequate protein. Deprived of carbohydrates, the body turns to burning fat for energy, which can reduce blood glucose levels and improve insulin resistance. The hypothesis is that many tumors depend on glucose, so radically reducing blood levels of glucose and insulin will slow tumor growth.
But most of the research is still in early stages. “In many animal models, a ketogenic diet does suppress tumor growth,” says Evan Lien, PhD, an assistant professor at the Van Andel Institute in Grand Rapids, Michigan, whose work on nutrition and cancer has been supported by the Damon Runyon Cancer Research Foundation. “The problem is, in other models, it accelerates tumor growth. We don’t understandthecontextinwhichthatdietworks—ordoesn’twork.”
One promising area relates to glioblastoma, a form of brain cancer with a generally poor prognosis. In a systematic review of nine clinical studies published in the journal
Nutrients in 2022, reviewers concluded that the ketogenic diet “is supported by most published studies as an effective therapy in the treatment of malignant gliomas due to its positive effects on patient survival.” Says DemarkWahnefried, “Ketones pass the blood-brain barrier, and there is some evidence [that a ketogenic diet may be effective] for glioblastoma and preventing seizures that result from that cancer. But it’s difficult to eat that way. It can be difficult to consume adequate fiber as well as many minerals and vitamins—and to limit red meat and processed meats. When most people follow the keto diet, they increase their intake of meat. You can be eating [foods such as] salmon and avocado and have a healthy keto diet, but it takes a lot of work.”
Most dietary studies evaluate a diet’s composition—what people eat. But when we eat may also play a role in fostering an environment that starves tumor cells while allowing
normal cells to thrive.
Fasting may be beneficial for some people on chemotherapy. In animal models, says Lien, “if you take animals with cancer and fast them right before chemotherapy, that makes chemotherapy work better.” Clinical trials are now testing whether a short-term fasting regimen in combination with chemotherapy may affect outcomes in humans.
Short-term fasting may help reduce certain side effects of chemotherapy as well, adds Johns Hopkins oncology nutritionist Mary-Eve Brown, RDN. For example, she says, “fasting can be beneficial for people on cisplatin chemotherapy. Several studies have shown that when these patients fast 24 hours before and after this chemotherapy, there is less nausea and vomiting.” Research has found similar benefits for other chemotherapy protocols. She doesn’t recommend it for people with cancer who are losing weight, but “if you’re eating well, not losing weight
and interested in short-term fasting before chemotherapy, talk to your health care team.”
Intermittent fasting, in which one eats only during a short window of time each day, may have additional benefits. One clinical trial is lookingatthefeasibilityofexercise plus intermittent fasting—no food or drink after 8 p.m. or before 11 a.m the next day—in women with hormone-positive metastatic breast cancer. Some studies have found that intermittent fasting reduces blood sugar and insulin levels as well as insulinlike growth factor, a compound associated with tumor growth.
“Intermittent fasting stabilizes my eating patterns, and it has helped with side effects of my treatment,” says Julie Murkette, 66, a study participant. She lives in central Massachusetts, where she runs a small publishing house; she’s married and has five sons and five grandchildren. Murkette was diagnosed with Stage IV metastatic
CANCER GENOMICS—THE study of DNA sequencing and gene expression—has led to precision cancer treatments that target tumor mutations. Today, some scientists are using these tools to develop nutrition-based treatments, an approach called precision nutrition.
“What really kicked this field off was the finding that some cancer cells are very dependent on an amino acid named serine,” says Evan Lien, PhD, a cancer and diet researcher at the Van Andel Institute in Grand Rapids, Michigan. “About 10 years ago, some groups showed
that when you give animals [with certain cancers, such as pancreatic and colorectal] a serine-deficient diet, it impaired tumor growth.”
Several clinical trials are now underway. One such clinical trial, currently recruiting participants, is being run by Faeth Therapeutics (faeth is Welsh for “nutrient”), a private firm founded by seven established cancer researchers to explore combining dietary interventions with pharmaceuticals to enhance response to the drugs. “We can use precision nutrition to starve tumors of what they need to grow,” explains Faeth
In the near future, it may be possible to design specific diets tailored to individual genomic profiles to starve tumors.
breast cancer in 2021. During the study period, she participated in a Zoom exercise class three times a week and fasted intermittently. She didn’t change what she ate. “I was already eating pretty healthy,” she says.
Since the study ended, in April 2022, Murkette has kept up the exercise and intermittent fasting regimen. “I don’t know if it’s the meds working or a combination of meds, exercise and intermittent fasting (all of which I continue to do), but as of December 2022, I am NED (no evidence of disease). Even my oncologist was a bit taken aback by the results.” She’s definitely feeling good these days. “There’s a tendency not to overeat over the course of the day,” she says, “and I’m in the best shape I’ve been in for 20 years.”
It can be daunting to navigate your way through cancer treatment and its obstacles to eating right. Many treatments can sap appetite, cause nausea or other issues, such as mouth sores, and lead to fatigue. So the first goal is to work with your care team to make sure you can continue eating normally to maintain your nutrition status. And if you are considering a specific dietary intervention, enlist your treatment team in that decision.
You don’t have to do it alone. Try working with a registered dietitian (RD) or, if possible, a board-certified specialist in oncology nutrition (CSO), a registered dietitian with additional training to work with cancer patients. But the truth is, many people undergoing treatment get no nutrition help at all.
Nutrition support should be a standard of care for people on treatment, argues Lorenzo Cohen, PhD, the Richard E. Haynes Distinguished Professor in Clinical Cancer Prevention at MD Anderson. “We have specialists trying to figure out the right surgical or chemo treatments for people with cancer—we need to take the dietary component as seriously,” he says. “We need professionals working with patients. We need to take the burden to navigate eating well during treatment off the patient and put it where it belongs: in a formal profession.”
Insurance often does not pay for these services, he acknowledges, but he advocates for changes that would require insurers to do so. A healthy diet, says Cohen, is one of the foundations of an anticancer lifestyle, whether you want to avoid getting cancer in the first place, reduce the burdens of treatment, reduce the risk of recurrence, protect against a second cancer or strengthen your chances of becoming the healthiest longtime survivor you can be. ■
One trial is recruiting individuals with metastatic pancreatic cancer, who generally have poor survival odds. Sequencing RNA from tumor biopsy samples, Faeth researchers have found that about 80% have tumors that rely on serine. Participants receive a free diet rich in fruits and vegetables, with protein coming from special shakes that contain essential amino acids but not serine and glycine (another amino acid potentially associated with pancreatic tumor growth).
“It’s real food, shipped to the patients’ doors,” Parikh says.
For more, read our Focus on this topic: cancerhealth.com/eating
Other clinical trials at the company are focusing on colorectal, endometrial and ovarian cancers. Preliminary results are expected in about a year.
“Every time a patient with pancreatic cancer comes into the office of a gastrointestinal oncologist, the first question is, ‘What can I change about what I eat?’” says Parikh. “The oncologist usually just has to wave his hands around and say, ‘Just eat healthy.’ We are aiming to change that. I want every cancer patient to have a nutrition intervention that is evidence-based.”
Says Lien, “My view is, there is never going to be a magic
bullet, a single diet that will cure cancer. But there is a real opportunity to leverage nutrition to make existing cancer treatments work better. It’s pretty exciting to consider how we can leverage dietary interventions in combination with drugs that are already being used or are in development.”
Wanda Zimmer, 67, a retired flight attendant, lives in Newport Beach, California. She has chronic lymphocytic leukemia (CLL).
MY PHONE RANG AT THE rented apartment we had just moved into for four months while I underwent a stem cell transplant and follow-up care at Stanford Hospital. I heard my doctor say, “Go home, Wanda. Your donor just backed out. No, you can’t be admitted tomorrow for your transplant. We will try to find another match for you, but it will be difficult because he was your only perfect match in the world.” My donor had all the right antigen markers for me.
Those words from 2011 still ring in my ear. Since 2006, I had been battling a particularly aggressive form of the blood cancer chronic lymphocytic leukemia (CLL). Chemo wasn’t keeping it under control, and the disease so impaired my immunity that I had reoccurring life-threatening infections. We were shocked, and, in truth, so were our doctors at Stanford Hospital; no one
had ever backed out the day before admission for a stem cell transplant.
My husband and I drove for seven hours back home, the longest drive of my life. Two weeks later, within 40 minutes of not feeling well, I went into a coma with septic shock. I wasn’t expected to survive.
Four days later, I woke up from the coma to the news that another match had been found. It wasn’t a perfect match, so there was a risk of complications, such as graft-versus-host disease, in which the body rejects the transplant.
Nevertheless, I thought of him as my “perfect stranger.” Aaron, a family man from a tiny town in Texas, never expected the phone call he received 18 months earlier after signing up with Be The Match, a national marrow registry. After discussing his nervousness with his wife, she asked him what he was going to do. His response was: “I’m gonna go save her life.”
This time I did enter Stanford Hospital. I had radiation and preconditioning with a monoclonal antibody. I was fearful that this donor would back out too. When transplant day arrived, Aaron’s cells were delivered via
courier and dripped into my Hickman catheter [a central line catheter placed on the right side of the chest wall]. I held tightly to the tube and gave thanks to someone I never met whose cells were flowing through me. Such a strange feeling.
In the end, Aaron’s cells acted like a perfect match. I am happy and healthy—in remission now since 2012—and became a volunteer courier for Be The Match. I give back by delivering lifesaving cells to recipients. Aaron and I corresponded for a year through cards and letters, and one day, I picked up the phone. I was overcome with emotion. How do you thank someone who saved your life, knowing that he could’ve backed out—but didn’t?
Shortly after the phone call, my employer at the time, Southwest Airlines, flew Aaron, his wife and their three children to meet me, my husband and our three children. At the airport, I held on to this man like a long lost friend. We took them to Disneyland for the week.
In the 10 years since that moment, we’ve stayed in close contact, gone on a cruise together, had them to our ranch in Colorado. I send a note to Aaron every year on my transplant anniversary to thank him for saving my life.
Now my perfect stranger is not a stranger to me anymore. He’s just perfect. ■
They may be a great option for people who have exhausted available therapies or for newly diagnosed people seeking cutting-edge care. Finding the right clinical trial can be challenging. To begin, ask your health care provider about them and browse this list.
American Cancer Society cancer.org
The “Clinical Trials: What You Need to Know” section addresses many questions and concerns about clinical trials, including eligibility criteria and what the various types and phases of clinical trials mean.
Breast Cancer Trials
breastcancertrials.org
This nonprofit trial-matching service finds studies for people who are newly diagnosed, undiagnosed but at high risk, experiencing cancer recurrence or living with metastatic disease.
Cancer Research Institute (CRI)
cri.careboxhealth.com
CRI focuses on immunotherapy clinical trials. A personal trial navigation service is available both online and by phone at 855-216-0127.
Cancer Support Community (CSC)
cancersupportcommunity.org
CSC’s trial-matching service is available online or by phone at 888-793-9355. The program seamlessly guides English and Spanish speakers through initial decisions and questions about treatment at any stage.
CenterWatch centerwatch.com
In addition to publishing monthly digital resources on clinical trials, this global database sorts active industry-sponsored trials by location and condition.
ClinicalTrials.gov clinicaltrials.gov
The National Library of Medicine caters to people with a range of medical conditions, including cancer, via a database of publicly and privately funded studies.
EmergingMed app.emergingmed.com
This confidential matching, referral and navigation service includes a searchable database and the option to speak with a clinical trial navigator.
Fight Colorectal Cancer trialfinder.fightcrc.org
Curated by the Immunotherapy Workgroup, this clinical trial finder is a one-stop online search engine. The site also hosts a related blog.
Livestrong Foundation livestrong.org
Free, confidential and personalized support is available upon completion of an online request form or by calling 855-220-7777.
LUNGevity Foundation
clinicaltrials.lungevity.org
Search this national database of over 1,000 lung cancer clinical trials by condition, study type, location and more.
National Cancer Institute (NCI) cancer.gov
Search the NCI database of active studies or contact the help line at LiveHelp.Cancer.gov or 800-422-6237.
National Comprehensive Cancer Network (NCCN) nccn.org
Search for clinical trials funded by the NCCN Oncology Research Program at its 32 member institutions across the United States.
OncoLink
app.emergingmed.com/oncolink/ homeapp.emergingmed.com
OncoLink has trial information for patients, families and providers. Call 800-474-9892 or search its database to view trial sites.
Trials Today
trialstoday.org
Part of ResearchMatch, Trials Today connects people to research studies across the country.
Kami Pullakhandam is a clinical research coordinator at the UCSF Helen Diller Family Comprehensive Cancer Center’s Breast Care Center.
Can you describe your role?
A clinical research coordinator manages the patient’s involvement and activities in clinical trials, such as those testing new treatments. We often serve as a bridge between the provider and the patient. For example, there’s a lot of communication we do to make sure that patients are aware of their schedule and to schedule procedures in a way that doesn’t significantly impact their quality of life or serve as a major hindrance to them.
How else do you help patients?
The level that a research coordinator is involved with a patient is often dependent on just how complex a trial is. With a trial that’s very complicated, a clinical research coordinator can help to simplify things for a patient and serve as a very accessible resource for them. If the trial is for an investigational drug, a clinical research coordinator may help track patients’ symptoms. We can help escalate any concerns patients may have and maybe get a faster or more detailed response from their clinical team. Even if I don’t know the answer to a question, I’m always able to help direct patients to someone they can get their answer from.
Aside from accessing experimental treatments, why would
a patient want to be part of a clinical trial?
I think that when patients are enrolled in a clinical trial, they get more monitoring than is the standard of care because there are more people involved in their care and watching out for them. That’s something that is often overlooked when patients are considering enrolling in clinical trials that I would say is a massive benefit to them. In general, of course, by participating in a trial, patients are able to contribute to a larger body of knowledge that benefits not only them but also future generations.
Can we talk about your meeting with First Lady Jill Biden last October?
In honor of Breast Cancer Awareness Month, Jill Biden came to visit to better understand UCSF [University of California, San Francisco] initiatives surrounding breast cancer. My time with her was spent speaking about the future of breast cancer. I was able to share with her my motivations for pursuing the job that I’m in now as well as my future goal of becoming an oncologist. And we were able to speak a little bit about research at UCSF and how that’s crucial to the future of breast cancer care.
It was a very special moment to be able to meet her and share all the hard work that we’ve been doing.
What inspires you in your work?
One of the most fulfilling aspects of my job is first meeting a patient, taking the time to recognize where all of their worries lie and then working to address all of those concerns and really provide a comforting atmosphere. After several months, a lot of my patients have expressed a greater confidence in themselves to be able to tackle the challenge ahead of them, which is their breast cancer diagnosis. I think it’s really fulfilling to be a part of that transformation. ■
Who’s on your team?
cancerhealth.com/team
Bladder cancer is among the most commonly diagnosed cancers in the United States, let one of the least known and understood. Yet in 2023, more than 82,000 people will be diagnosed with the disease and more than 17,000 will not survive it.
The Bladder Cancer Advocacy Network (BCAN) is a community of patients, caregivers, survivors, advocates, medical and research professionals united in support of people touched by bladder cancer.
Each year, we provide thousands of patients, caregivers and the medical community with the educational resources and support services they need to navigate their journeys. Additionally, since 2009, BCAN has funded more than $6 million in bladder cancer research.
To learn more about bladder cancer and the Bladder Cancer Advocacy Network, please visit bcan.org or call 1-888-901-2226.
BCAN’s free-of-charge bladder cancer resources include information about:
• Prevention
• Diagnosis
• Treatment
• Survivorship
• Caregiving
• Clinical trials
Balm Box makes self-care sets for you or your loved one’s specific cancer type. After surviving four types of cancer in eight years (melanoma and basal cell skin cancer, thyroid cancer and breast cancer), founder Liz Benditt wanted to offer people with cancer nontraditional care options. The Finest Radiation Care Package ($79.99) features holistic products to soothe skin from radiation burns or itchiness. It includes a botanical burn balm, calendula soap, a no-sweat ice pack, a seat belt barrier (to protect breast cancer patients’ torsos), lip balm and a lighthearted Cancer Card to be whipped out like a credit card and used to get out of activities. Other care boxes include Sweetest Rest & Recovery Box, The Optimal Chemo Care Box and The Best Mastectomy Prep Package ($49.99 each). Take the Balm Box Finder quiz to find the perfect care box for your needs!
For many people, cancer is easier to navigate with a grasp of the science and biology behind a diagnosis and treatment. The Song of the Cell: An Exploration of Medicine and the New Human is the latest book by Siddhartha Mukherjee, an oncologist who won a Pulitzer Prize for The Emperor of All Maladies: A Biography of Cancer (which was made into a PBS documentary that’s available for streaming). In everyday language, Song of the Cell explores treatments based on manipulating cells, such as immunotherapies.
Care + Wear’s innovative and stylish garments are designed for women, men and children undergoing chemotherapy, infusion or other treatments and are available in various sizes, colors and bundles ($50 to $174). The Women’s Chest Port Access Support Bundle With Blouse ($174) includes a warm hoodie, top and blouse all featuring chest port access to avoid having to disrobe during treatment. And an array of PICC Line Covers and Sleeves ($25 to $32) help protect catheters. The clothing line donates up to 10% of its profits to leading cancer institutions. What’s more, health care workers can now shop Care + Wear for scrubs, caps, jackets and more.
Jill Meyer-Lippert, RHD, began her dental career in 1992, the year her mom was diagnosed with breast cancer. After witnessing how chemo impaired her mother’s oral health, Meyer-Lippert founded Side Effect Support to help cancer survivors manage oral discomfort and maintain oral health. Side Effect Support provides adults and children with lip care, mouth rinses, toothpaste, toothbrushes, xylitol gum, mints and more. Oral Care Kits ($12 to $26) offer a sampling of products to relieve dry mouth symptoms without harming teeth or tender tissues.
Find more products to make life easier: cancerhealth.com/good-stuff
For many cancer survivors, weight gain is an unwelcome side effect. But incorporating healthy lifestyle habits can help.
WHILE YOU MAY HAVE BEEN ADVISED NOT TO lose weight after a cancer diagnosis, it is more common to gain weight. This unwanted weight gain is often associated with a decrease in physical activity and exercise, often due to fatigue. Other physical restrictions related to surgery or low blood cell counts due to chemotherapy, which can cause fatigue, may also make you more sedentary. Medications such as steroids alter metabolism, and hormonal treatments, for both men and women, often increase body fat. Finally, emotional stress can lead to a desire for more high-fat and high-sugar foods.
It’s important to understand the realities of what happens to the body as it battles cancer, but it’s also essential to recognize that your body will respond positively to incorporating certain lifestyle changes. No matter your age, cancer type or treatment status, you can take positive steps. Cultivating healthy habits in all areas of your life—including stress management, enjoyment, sleep, connection with others and a sound diet and exercise plan—will not only help you feel better but may also lead to results on your scale. Start with these five steps:
Try to move for one minute every hour you are awake. This will give you more energy as well as increase the number of calories you burn throughout the day. For example, simply by adding an extra 2,000 steps (about one mile) per day, you will burn an extra 100 calories— equal to losing an extra pound over a month.
The more muscle you have, the more calories you will burn. Resistance training is beneficial for weight loss because it not only burns calories while you do it but also elevates your metabolism, resulting in more calories burned each day. Plus, building muscle improves strength needed for everyday activities.
Create a moderate calorie deficit so your body uses up stored fat for fuel. Calculate your estimated calorie burn (use an online calculator). Then aim to reduce daily calories by 300 if you’re a woman and by 500 if you’re a man—while maintaining a balanced, nutritional diet. Keep tabs on your calories with an online food tracker.
Drinking enough water and other fluids helps reduce your appetite and supports your body’s muscular, digestive and other systems. It also assists in flushing waste from the body and helps keep you more energetic. Hydration may also improve metabolism and how your body stores fat.
When stressed, your body has a surge of adrenaline, triggering the release of cortisol, which makes us crave quick energy from sweet, salty and fatty foods. These release pleasure chemicals linked with stress relief. A regular stress management routine can help reduce these habits as well as improve energy, focus, memory and quality sleep.
Your opinion matters! Please take our survey and let Cancer Health know which topics are important to you. As a thank-you, we’ll choose five entries at random to receive a $25 prepaid Visa card.*
How do you read Cancer Health?
❑ In print ❑ Online ❑ Both
How much time do you spend reading Cancer Health magazine or CancerHealth.com?
Rate your interest in the following topics. (1 = not very interested, 5 = very interested):
Which Cancer Health newsletters do you read?
❑ CH News ❑ Both
❑ CH Treatment News ❑ Neither
Do you follow Cancer Health on any of these social media platforms? (Check all that apply.)
❑ Facebook ❑ Instagram ❑ Twitter
How would you describe yourself? (Check all that apply.)
❑ A person living with cancer
❑ A cancer survivor
❑ A caregiver for someone with cancer
❑ A health care professional
❑ A participant in a clinical trial
❑ Other ___________________________
If applicable, what type(s) of cancer do you have or have you had?
What year were you born?
What is your gender?
❑ Male ❑ Female ❑ Transgender ❑ Other
What is your current level of education?
❑ Some high school ❑ High school graduate
❑ Some college ❑ Bachelor’s degree or higher
What is your annual household income?
❑ Less than $15,000 ❑ $15,000–$34,999
❑ $35,000–$49,999 ❑ $50,000–$74,999
❑ $75,000–$99,999 ❑ $100,000 or more
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 ___________________________
How would you rate the overall content of Cancer Health?
❑ Excellent ❑ Good ❑ Fair ❑ Poor
Name: Street address: City/State/ZIP: Email:
For 75 years, Damon Runyon has provided funding to scientists who bet their careers on high-risk, high-reward hypotheses, concepts, and strategies. In this time, Damon Runyon scientists have advanced cancer research exponentially – because each one builds upon the achievements of those who came before.
As we celebrate this milestone of scientific achievement, we honor the scientists who have contributed to this legacy and continue to carry it forward. With them, we look to the future.
To learn more, visit damonrunyon.org
Gordon J. Freeman, PhD Damon Runyon Fellow ’79–’81 Alexandra-Chloé Villani, PhD Current Damon RunyonRachleff Innovator