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10
FINDING THE RIGHT MATCH
After a stem cell transplant, Charlie Huang relied on help from his wife, Doris.
When Charlie Huang almost lost the chance at a lifesaving stem cell transplant to treat his acute myeloid leukemia, he vowed to help others find a donor match. BY
2 From the Editor Patients & Advocates
4 Care & Treatment Afternoon chemo | did you know HPV causes cancer? | screen all adults for hepatitis B | delaying prostate cancer treatment | fewer options for Black colon cancer patients | immunotherapy and endometrial cancer
6 News
Eight goals of the newly launched National Cancer Plan | no more free cancer screenings?
7 Voices
You can’t escape race in cancer, writes blogger and breast cancer survivor Megan-Claire Chase.
JENNIFER COOK
8 A Melanoma Diary
Leah Adams is a Stage I melanoma survivor. She also helps care for her father, who has Stage IV of the same cancer.
14 Resources
Information on oral, mouth and throat cancers, a subset of head and neck cancers
15 Good Stuff
Summer products that protect skin and enlighten minds
16 Solutions
Hints for lifting brain fog
17 Reader Survey
Share your thoughts about coping with cancer.
COVER AND THIS PAGE (HUANG) PAUL SAKUMA; (HEART
AND
cancerhealth.com SUMMER 2023 CancerHealth 1
SPEECH BUBBLE
T CELL/CANCER) ISTOCK CONTENTS
Patients & Advocates
CANCER SURVIVORS MAKE
awesome advocates. When Charlie Huang hit his lowest point, he still focused on helping others. Hospitalized with recurring acute myeloid leukemia and in need of a lifesaving stem cell transplant—with no donor match to be found—he thought to himself, This is the worst feeling. I do not ever want anyone to feel the way I am feeling, with so much despair and hopelessness.
Such was the genesis of Charlie’s Law, legislation that expands the donor pool and helps find matches. Turn to our cover story on page 10 to read about Huang’s inspiring journey and learn why minorities—he identifies as Asian American—have worse odds of finding a donor.
After Leah Adams had surgery for Stage I melanoma, the avid runner, now 29, sank into a depression. In “A Melanoma Diary” on page 8, Adams recounts how she morphed into a full-throttle advocate—and a caregiver for her father, who has metastatic melanoma.
Indeed, sharing stories makes for powerful advocacy and education.
In our Voices essay on page 7, breast cancer survivor Megan-Claire Chase explains why “You Can’t Escape Race in Cancer.” And our summer roundup of Good Stuff on page 15 includes a memoir by David Chill titled Stage 5 A physically active nonsmoker, Chill was shocked to learn in 2012 at age 55 that he had Stage IV lung cancer. His tale highlights the importance of advocating for yourself. Good Stuff
also features sunscreens, stylish clothes with ultraviolet protection and other products to safeguard your skin.
Screening for hepatitis B and getting vaccinated against human papillomavirus (HPV) are two other proven ways to protect against cancer and ensure better health. Learn about that and more in Care & Treatment on page 4.
Preventing cancer is one of the eight goals laid out in the newly launched National Cancer Plan, a road map that complements the Cancer Moonshot initiative. Read more on page 6. The plan envisions a society where most cancers are prevented and “every person with cancer lives a full and active life.” It’s also a call to action. We know several advocates leading the way.
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AFTERNOON CHEMOTHERAPY
Receiving chemotherapy in the afternoon may lead to better response and fewer side effects—at least for women.
Researchers from the Korea Advanced Institute of Science and Technology compared outcomes among 210 patients with diffuse large B-cell lymphoma who received chemotherapy at around 8:30 a.m. or around 2:30 p.m. Among women, those treated in the morning had shorter overall survival and progression-free survival compared with those treated in the afternoon. What’s more, women treated early in the day were more likely to develop neutropenia and infections that led to delayed or reduced drug doses. However, these associations were not seen for men.
The researchers also analyzed data from 14,000 healthy people to identify circadian variations in blood lab values. Women’s white blood cell counts were lower in the morning and higher in the afternoon, indicating that cells were produced in the bone marrow earlier in the day. Men did not show as much variation over the course of the day. This suggests that women may be more vulnerable to the toxic effects of chemotherapy if they are treated in the morning, while blood cell production is underway.
Did You Know HPV Causes Cancer?
More than a quarter of Americans are unaware that human papillomavirus (HPV) causes cervical cancer, and even fewer know it also causes other malignancies. A common sexually transmitted infection, HPV triggers abnormal cell growth that can lead to cancers of the cervix, anus, vulva, vagina, penis, mouth and throat.
Analyzing data from the Health Information National Trends Survey, Eric Adjei Boakye, PhD, of Henry Ford Health, and colleagues found that 70% of people surveyed in 2020 know that HPV causes cervical cancer, down from 78% in 2014. The proportion who know that the virus causes anal, penile and oral cancers was mostly unchanged, at around 30%.
The Gardasil 9 vaccine protects against nine HPV types. The Centers for Disease Control and Prevention recommends vaccination for girls and boys at ages 11 or 12, with catch-up vaccines for people up to age 26. The Food and Drug Administration has approved the vaccine for women and men up to age 45.
“We can completely eliminate cervical cancer by getting everyone vaccinated who should be,” says National Cancer Institute director Monica Bertagnolli, MD.
Screen All Adults for Hepatitis B
All Americans ages 18 and older should be screened for hepatitis B virus (HBV) at least once, according to updated guidelines from the Centers for Disease Control and Prevention. People at increased risk should be tested more often, and HBV testing should be repeated during each pregnancy. This replaces previous guidance that
recommended screening based on risk factors. HBV can be transmitted via shared needles and personal care items, during sex and from mother to child during pregnancy. Chronic hepatitis B can lead to serious complications, including cirrhosis and liver cancer. HBV vaccination is now recommended for all infants, children and adults.
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CARE & TREATMENT BY LIZ HIGHLEYMAN
Delaying Prostate Cancer Treatment
Men with localized prostate cancer who delay treatment while receiving regular monitoring have the same high survival rate as those who receive prompt surgery or radiation. Prostate cancer typically grows slowly, and most men with the malignancy do not die from it.
In a study of 1,643 men with early prostate cancer, about 97% were still alive 15 years after diagnosis regardless of whether they were randomized to receive surgery, radiation plus hormone therapy or active monitoring. Men in the latter group were more likely to experience disease progression, but this did not lead to higher mortality. Delaying or skipping treatment let patients avoid side effects, such as urinary incontinence and sexual problems.
“Patients and clinicians can and should take their time to weigh up the benefits and possible harms of different treatments in the knowledge that this will not adversely affect their survival,” says Freddie Hamdy, MD, of the University of Oxford.
Immunotherapy for Endometrial Cancer
Two PD-1 checkpoint inhibitors reduced the risk for disease progression or death for people with advanced or recurrent endometrial cancer, according to research presented at the Society of Gynecologic Oncology Annual Meeting on Women’s Cancer. Both drugs—monoclonal antibodies that restore T-cell activity against tumors—”hit a home run,” according to Rebecca Arend, MD, of the University of Alabama at Birmingham.
In two separate Phase III trials, Jemperli (dostarlimab) plus chemotherapy improved progression-free survival by 72%, while Keytruda (pembrolizumab) plus chemotherapy led to a 70% reduction in the risk for disease progression or death among women whose endometrial tumors had mismatch repair deficiency or high microsatellite instability, meaning they lack mechanisms to repair damaged DNA. However, Keytruda appeared to work better for patients whose tumors lacked these characteristics.
For more care and treatment news: cancerhealth.com/science-news
Fewer Options for Black Colon Cancer Patients
Colon cancer patients with African ancestry may have fewer treatment options than those of European descent, according to a genomic profiling study presented at the American Association for Cancer Research annual meeting.
Henry Walch, MS, of Memorial Sloan Kettering Cancer Center, and colleagues analyzed DNA sequence data from 4,441 people treated for colorectal cancer. The median overall survival time was 45.7 months for people with African ancestry versus 67.1 months for those with European ancestry.
The researchers found that 14% of patients with African ancestry and 20% of those with European ancestry qualified for immunotherapy based on biomarkers such as microsatellite instability and tumor mutation burden. Among those lacking these biomarkers, people of African ancestry were less likely to have tumors with mutations that would make them eligible for targeted therapy.
“The reduced rate of actionable mutations in patients of African ancestry may mean that these patients have fewer options of targeted therapies and immunotherapies that yield improved outcomes for many colorectal cancer patients,” Walch says.
cancerhealth.com SUMMER 2023 CancerHealth 5
EIGHT GOALS OF THE NATIONAL CANCER PLAN
Imagine a society where most cancers are prevented and “every person with cancer lives a full and active life.” That’s the vision of the National Cancer Institute’s recently unveiled National Cancer Plan.
The plan lays out a road map for reaching these objectives by bolstering the Cancer Moonshot initiative, which aims to cut the cancer rate in half over the next 25 years and to render more cancers manageable chronic diseases rather than fatal illnesses. As vice president, Joe Biden launched the Cancer Moonshot in 2016. As president, he supercharged the federal program in early 2022.
The plan sets eight goals:
Prevent Cancer: All people and society adopt proven strategies that reduce the risk of cancer.
Detect Cancers Early: This enables more effective treatment and reduces mortality.
Develop Effective Treatments: Treatment, with minimal side effects, is accessible to all people with all cancers.
Eliminate Inequities: Disparities in cancer risk factors, incidence, treatment side effects and mortality are eliminated.
Deliver Optimal Care: The health care system delivers evidencebased, patient-centered care to all people.
Engage Every Person: Every person with cancer or at risk for cancer can participate in research or otherwise contribute to the collective knowledge base.
Maximize Data Utility: Secure sharing of privacy-protected health data is standard practice, and researchers share and use available data to achieve rapid progress.
Optimize the Workforce: The cancer care and research workforce is diverse, reflects the communities served and meets the needs of all people.
The National Cancer Plan also includes a set of strategies to reach each of the eight goals and a call to action for every person and organization to do their part. (Visit NationalCancerPlan.cancer.gov for details, including ways you can engage and contribute.)
“Ending cancer as we know it will take collaboration, cooperation and integrated work plans that address the entire cancer continuum,” said Karen Knudsen, MBA, PhD, the CEO of the American Cancer Society, in a statement supporting the plan. “We applaud the leadership of the Moonshot initiative and the comprehensive framework described [in the National Cancer Plan].”
No More Free Cancer Screenings?
A federal judge in Texas overturned the requirement that health insurance must cover certain preventive services, including some cancer and diabetes screenings. The ruling involved a case in which the plaintiff, a Christian company, objected on religious grounds to providing free HIV prevention medicine to employees.
The Affordable Care Act mandates that preventive services be fully covered if they are recommended by the U.S. Preventive Services Taskforce, a nongovernmental advisory board of experts. U.S. District Judge Reed O’Connor ruled this to be unconstitutional because the advisers aren’t officers of the United States. Of note, preventive services recommended by federal agencies would likely still be covered.
As the judge’s ruling is appealed and the case moves toward the Supreme Court, KFF Health News notes that insurance coverage would likely not be affected in the immediate future because most policies cover services for a calendar year. In short: Don’t delay any of your screenings.
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The road map complements the Cancer Moonshot.
1 2 3. 4 5 6 7 8 NEWS BY TRENT STRAUBE
You Can’t Escape Race in Cancer
HAVE YOU EVER BEEN involved in a group where you felt safe enough to be authentic? What happens when that safe bubble unexpectedly bursts?
The more I talk openly about race within the cancer space, the more I see the true colors of those I never dreamed would have a racist bone in their body. I naively hoped that race wouldn’t matter after I was diagnosed with cancer because it can be life-threatening. After all, we all bleed red. But I was slapped with another harsh dose of reality once I understood there’s no escaping racism and white supremacy. It seeps into every part of my life and is just as toxic and unbearable as my cancer treatments. It became clear early on that I would never be seen as just a cancer patient. I would always be seen as a Black cancer patient and, ultimately, a Black cancer survivor.
Becoming an advocate was born out of my challenging experiences and the urgent need to spotlight the issues of access to care. Whether you want to hear it or not, race, age and your sexual identity play an ugly role in getting your concerns heard, having your pain believed and making
connections with others.
While I initially found solace and connections in the early days of my survivorship, it has become more challenging to be in spaces—on Zoom or a panel or in a support group— where I am the only Black person. My nervous system is constantly in fight-or-flight mode, exacerbating my pain from toxic cancer treatments.
When you have the added stressors of coming from a marginalized community, where are the safe spaces to process your cancer experience mentally, emotionally and physically? How can we heal when dealing with microaggressions and implicit bias from doctors, other medical staff, employers and some cancer patients in support group settings?
I now understand why certain Black-only breast (chest) cancer support groups exist. I have yet to find a general cancer Black-only group that’s a mix of men, women and those whose pronouns are they/them. While I am thankful for my many genuine friends in Cancerland, I am acutely aware that the majority are white.
I’m tired of being the only Black person in the room or on the Zoom screen.
I’m tired of white people wanting to recommend other “strong Black people” to me.
I’m tired of white people who send me private messages saying I’m an inspiration but who won’t state it publicly.
Being Black has shaped my access to care, access to pain management and access to community support. With its never-ending rhetoric, this country forces us to see that we’ll never be good enough, respected or valued. Black lives don’t matter, and we are reminded of that daily.
I have lost count of the times I’ve received comments on various social media or in virtual support groups that “not everything is about race” or “race doesn’t belong in the cancer space.”
It’s a bitter pill to swallow, knowing there’s no scenario where I can eliminate having to center whiteness. ■
COURTESY OF MEGAN-CLAIRE CHASE
more from our bloggers at: cancerhealth.com/blogs VOICES BY MEGAN-CLAIRE CHASE cancerhealth.com SUMMER 2023 CancerHealth 7
Read
Megan-Claire Chase, aka Warrior Megsie, is a seven-year breast cancer survivor. She’s also a blogger and advocate.
Megan-Claire Chase talks cancer in Stories From the Stage on PBS in June.
A Melanoma Diary
Leah Adams, 29, of Cleveland, is a Stage I melanoma survivor. She also helps care for her dad, who has Stage IV melanoma.
I STARTED RUNNING WHEN I WAS 19 AND STILL love it. I’ve run three marathons, a half-marathon and lots of 5Ks and 10Ks. I used to love being in the sun. Growing up, the models I looked up to were always thin and tan. Maybe I never saw myself as being pretty or beautiful. But I did when I was tan. We didn’t use sunscreen, and I used tanning beds on and off for about 10 years, even though I saw those big warning signs about skin cancer. When you’re young, you feel invincible.
August 2019
I had graduated with a master’s degree in social science administration and started a job as a program manager for the National Kidney Foundation. My dad had a suspicious mole on his back—it was oozing—so my mom told him to get it checked out. It was Stage 0 melanoma, the earliest stage. He had it removed as an outpatient. [Editor’s note: Stage 0 melanoma means the cancer is in the outer skin only. In Stage I, the tumor is small, while in Stage II, it’s larger, but neither has spread to lymph nodes. Stage III has spread to one or more sentinel (nearby) lymph nodes but not to distant parts of the body. Stage IV has spread (metastasized) to other parts of the body.]
September 2019
After that, my mom started paying more attention to my moles. I have a lot, like my dad. One was on the right side of my chest. It was black in the middle and brown on the outside with a red ring around it. So I got a scan at the end of September. They took a biopsy, asked if I had a family history of melanoma. I told them about my father.
October 2019
I got the call. It was Stage I melanoma. Luckily, I
wasn’t alone; I was with my boyfriend on a trip. They wanted to remove it as soon as possible and also remove and biopsy three sentinel lymph nodes to see if it had spread. I felt very alone, shocked, sad—and mad at myself because I felt I gave myself cancer.
November–December 2019
I got the surgery on November 6. The procedure took two hours, but I had to be in the hospital for eight. The lymph nodes were negative. The stitches had to stay on a long time, so I had keloid scars. They’re painful, and I have to treat them, even now.
First thing when I woke up, I asked when I could run again. “Oh, you won’t be running for quite some time,” they told me. Running could rip the stitches. That was hard for me. For a month and a half, I was in a depressed state. I still felt alone and too ashamed to share.
But at the end of 2019, I realized I could either keep having this pity party—I’m not beautiful anymore; I can’t tan—or I could change my life. So I shared my scar online. It blew up with likes and shares—and support. And you know, it was caught early. I got lucky. I was now completely more vigilant about my skin care. I started running again.
March 2020
The pandemic hit. Scans were canceled because of COVID. I didn’t get one until the end of 2020. That caused a lot of anxiety.
December 2020–January 2021
I really started to advocate about sun safety and skin cancer and melanoma. I got involved with the
8 CancerHealth SUMMER 2023 cancerhealth.com DIARY AS TOLD TO BOB BARNETT
Adams with her parents (her dad also has melanoma) and at the Virtual Boston Marathon in Cleveland
wasn’t a
Melanoma Research Alliance, the Melanoma Research Foundation and Impact Melanoma. I filled out the contact pages, saying, “I’m a survivor. I want to help.”
Then, on January 30, my dad had a seizure while driving my mom. He was rushed to the hospital. They found lesions in his brain and more lesions in his lungs. He had Stage IV metastatic melanoma.
February 2021
It was during peak COVID, so I couldn’t even see my dad in the hospital. His brain metastases had caused the seizure. Both the lung and brain lesions were inoperable. He had his driver’s license taken away because he had had a seizure. He was a driver for Amazon, so he retired early. He was 62.
March 2021
My dad started Gamma Knife radiation for the brain metastasis. In a two-week period, he had four rounds of radiation, the first COVID vaccine and dual-agent immunotherapy. The drugs sent him back to the hospital. They caused inflammation in his brain, causing seizure-like activity. He went down to one immunotherapy drug, and things got more stable, but side effects from radiation landed him in the hospital five times over nine months.
April 2021
I became an ambassador for sun-protective clothing companies and did promotions for sunscreen companies. Free sunscreen and clothing are my only compensation, but I’m fine with that. It’s all I need as a melanoma survivor. The number of companies making affordable and fashionable sun-safe clothing now is awesome.
October 2021
I ran my first marathon since melanoma! I ran for Impact Melanoma in the Boston Marathon. My dad was at the race, cheering me on. It was such an amazing experience.
For more first-person essays, go to: cancerhealth.com/stories
April 2022
I went on my first beach vacation as a melanoma survivor. We went to Naples, Florida. I was pretty nervous. You know, the Sunshine State? It was a little triggering. I can’t get a tan anymore, so I got a spray tan. We went out in the morning before the sun got really hot. I went through a bottle and a half of sunscreen that week. The hardest part was seeing people on the beaches just looking like raisins. I’m like, Holy cow, have you ever had a skin check? Are you wearing sunscreen?
December 2022
I had my three-month scan, which was negative. My oncologist told me I could now go to six-month scans. I said, “I appreciate that, but I’m not ready for that.”
February 2023
My dad had a bronchoscopy, which showed that his lung inflammation was from immunotherapy, not cancer. His melanoma is responding to treatment. But he has memory and some cognitive issues from the dead tissue in his brain and adrenal insufficiency from powerful steroids. He will have to be watched for the rest of his life. Once you’ve had cancer, your life revolves around scans.
March 2023
I went to my dermatologist and had two biopsies, but they were benign moles. My dad got his driver’s license back after 26 months. My mom drove him places. I did too. I’m an only child, so it’s just me helping my mom and dad. And he didn’t like that. A lot of things were taken from him, but he’ll tell you that he’s gained more quality time with his daughter and wife.
April 2023
Since I started sharing my story, I can’t tell you how many messages I get every week. People say, ”I got a skin check because of your story,” or “I wear sunscreen now.” It motivates me to do more. Melanoma rates are increasing. So here’s what I want to say: Have you gotten a skin check with a dermatologist yet? Skin checks can save your life. They saved mine.
cancerhealth.com SUMMER 2023 CancerHealth 9 (PAPER)
ISTOCK; (ALL OTHERS) COURTESY OF LEAH ADAMS
BY JENNIFER COOK
CANCER DIAGNOSIS IS HARD ENOUGH TO DEAL WITH under normal life circumstances, but it became a major ordeal for thousands of Americans during the height of the COVID-19 pandemic. Getting a diagnosis, scheduling medical appointments and receiving treatment—never simple tasks to begin with—were burdened with extra difficulties. What’s more, to avoid possible exposure to the virus, people with cancer in many cases could not be surrounded by their loved ones; instead, they had to face these challenges alone.
Charlie Huang knows the struggles well. His cancer battle has spanned the years of the pandemic. In August 2019, he was a 44-year-old criminal prosecutor in Santa Clara County, California, engrossed in the middle of a domestic violence murder trial, working long, intense hours, when he caught a cold from one of his three daughters, ages 12, 9 and 3 at the time. “I could not shake it. I just got worse and worse,” he recalls. His back went out, his stomach acted up and his muscles cramped, making climbing stairs difficult. And every day, he got terrible headaches.
Finally, in November, after the trial ended, Huang saw
his doctor, who told him he was stressed and needed physical therapy to address his slouch. “My head was so heavy, I couldn’t keep it upright,” he says. But after two weeks of relaxation, he was no better. So the doctor recommended blood work. When the results came back, the lab tech crew requested another test because they thought their equipment was broken. But the retest showed the issue was his blood: His white cell count was off the charts. The likely reason, he discovered, was chronic leukemia.
It took another three weeks for Huang to connect with a specialist, who was certain that Huang had acute leukemia
When Charlie Huang almost lost the chance at a lifesaving stem cell transplant to treat his acute myeloid leukemia, he vowed to help others find a donor match.
10 Cancer Health SUMMER 2023 cancerhealth.com PAUL SAKUMA
During COVID, Charlie Huang spent four months alone in a hospital while he underwent chemotherapy.
and that as a chronic leukemia specialist he could do nothing for him. But the doctor was also adamant that Huang go to the emergency room at Stanford Hospital right away. He arranged for a bone marrow biopsy at 6:15 a.m. the next morning, a Saturday, which confirmed the diagnosis—acute myeloid leukemia (AML), an aggressive blood cancer. After a weekend at home, Huang was admitted to the hospital on Monday, December 5, 2019. He was so ill, he recalls, “the doctors told me if I had waited three more days before going in, I would not be around anymore.”
REMISSION—AND RELAPSE
During his hospital stay, Huang was given four rounds of “superstrength chemo to basically do a reset of my bone marrow,” he explains. His last round of chemo was in April 2020. He had spent more than four months alone in the hospital as COVID raged across the country.
Huang returned to work in November 2020, hopeful that he was cured of AML. He resumed his old routine, avoiding COVID and getting bone marrow biopsies and blood draws “every so often.” So far, so good. Then he caught a minor cold in February 2021. “I thought it was allergies, but by the time April rolled around, my headache had come back,” he says. “That’s when I knew it was bad news.” This time, the doctors told him that “the only way to kind of stay around was a bone marrow transplant [also called a stem cell transplant].” But there were several hurdles to surmount first. Huang would need to be back in remission. And an appropriate match would have to be found.
REMISSION AGAIN—AND CHARLIE’S LAW
In May, Huang returned to the hospital and underwent a month of “consolidation” chemo that put him back into remission. Meanwhile, Stanford Hospital staff searched the local, national and global databases for a donor. “They came back and told me, ‘We’ve searched, and you don’t have a single match in the entire world,’” he says.
That’s not uncommon for minorities (Huang identifies as Asian American), especially those with no siblings (siblings offer the greatest chance for a match). While white patients have a 79% chance of finding a match, the odds drop to 48% for Latinos, 47% for Asians and Pacific Islanders and 29% for Black Americans. COVID was also making the odds more difficult, with international travel bans, border closings and a drop in stem cell collections.
“I felt so much despair,” Huang recounts. “I worked so hard, and I was so lucky to be in remission, but it didn’t
even matter. All the suffering through chemo didn’t matter because there was no light at the end of the tunnel for me.
“My girls and my family— they’re the center of my universe,” he continues. “To feel that they would grow up without a father, no one to teach them to drive, to scare their boyfriends away. I just remember crying in the hospital room by myself and thinking, This is the worst feeling. I do not ever want anyone to feel the way I am feeling, with so much despair and hopelessness.”
Huang’s emotional anguish planted the seed of an idea. If Californians could sign up to be organ donors when getting their driver’s licenses, he reasoned, why couldn’t they sign up to be stem cell and bone marrow donors? He immediately started drafting legislation in his hospital bed (see “Charlie’s Law: How It Will Help,” page 13).
THE PERFECT MATCH
Ironically, Huang knew of a perfect match: Denny, his only sibling. Denny had been tested when Huang first became ill, but he was a brain cancer survivor, which made him an unsuitable match. However, with no other eligible donors, Huang’s doctors decided to put Denny through two weeks of comprehensive testing to determine whether donating his stem cells would be safe for both brothers. They made the highly unusual decision to harvest Denny’s stem cells, a process that takes time but isn’t painful.
COURTESY OF CHARLIE HUANG 12 CancerHealth SUMMER 2023 cancerhealth.com
Charlie Huang, left, with his brother, Denny, a brain cancer survivor who donated lifesaving stem cells to Charlie
The stem cell transplant was done in July 2021. The first 100 days posttransplant required 24-hour care, which Huang’s wife, Doris, and his mother-in-law took on. “Your immune system is completely wiped out, so there’s no eating out, no salads, no eating anything raw. Everything had to be exactly the right way,” he says. His doctors predicted it would take a year to regain his strength, which Huang feels was accurate.
There are two big risks posttransplant, he says. The first is graft versus host disease (GVHD), which can be acute or chronic. The acute version, when the donor stem cells start to attack the host’s organs as foreign, can happen within days to a year after a stem cell transplant and can be fatal. (“Knock on wood, I’m out of the window for the acute,” Huang says.) The chronic version, which occurs more than three months posttransplant, leads to symptoms like dry eyes, dry mouth, fatigue, joint pain and rashes and can last a lifetime.
The second big risk is relapse, which means that, although the donor stem cells are doing their job in the host’s body, “the transplant didn’t work; the cancer is still too strong or overwhelming,” he says. “The doctors tell me it’s a three-year window—if I can make it past three years, then statistically the odds are really good.” This summer marks year two.
Huang is not taking immunosuppressant drugs, which could lower his odds of getting GVHD, because they increase his risk for relapse. “I told my medical team that I’d rather live with graft versus host disease than not be around for my kids,” Huang says.
LIFE, REIMAGINED
Huang is back at the Santa Clara County prosecutor’s office but no longer overseeing murder trials, which are stressful and consume months of high-pressure work. And he takes a lot more time off to be with his family.
“We try really hard to have dinner together every night and talk about our day,” Huang says. “We enjoy traveling as much as possible, and we’re always making more memories and trying out new experiences every time we take a trip.” Since the transplant, the family has been to three different islands in Hawaii in addition to New York City; Philadelphia; Washington, DC; Vancouver; Washington state; and, over spring break, Japan, where they visited Tokyo’s famous cat and pig cafés to cuddle the animals.
“My goal is to do as many things with my kids as possible,” he says. “Whatever happens in the future, I want them to remember that they did things with their dad—hanging out at the resort pool, deep-sea fishing, snorkeling, taking golf lessons together. I’m also trying to squeeze in as many parenting duties as possible—like picking my kids up and dropping them off at school. And my wife and I hold hands and watch Netflix together a lot more often now and enjoy our time together.
“I spent many nights alone in the hospital being so sad as I recalled my life. I thought I was doing the right thing, dedicating my time and energy to public safety, but it was at the expense of watching my kids grow up. And not to say my job isn’t important—it is very important. But anyone can do my job, but not anyone can be a father to my three daughters.” ■
CHARLIE’S LAW: HOW IT WILL HELP
As a criminal prosecutor and community activist, Charlie Huang is well connected. He has met many lawyers and legislators through the nonprofit he started, the National Asian Pacific Islander Prosecutors Association (NAPIPA), which now has seven regional chapters across the United States. And those connections helped him turn a dream into reality.
Spurred by his own challenges in finding a donor for a lifesaving stem cell transplant, Huang wanted to help others—especially those in underrepresented communities— find a matching donor. His idea was simple: Californians ages 18 to 40 who are applying for or renewing a driver’s license (or ID card) can sign up for the National Marrow Donor Program’s registry as a bone marrow or blood stem cell donor by checking a box. Potential donors will receive a kit in the mail for them to swab the inside of their cheek for DNA. When it is returned to Be The Match, that genetic information will be stored in a secure national database, and cancer doctors who need to find a match for their patients will have access to it.
Sponsored by Evan Low, a California assembly member, the bill failed in the appropriations committee when it was first introduced in 2021. Undeterred, Low reintroduced it in 2022. This time, Huang, the Leukemia & Lymphoma Society, Be The Match, Stanford Health, the University of California health care system and numerous volunteers formed a powerful coalition to get Assembly Bill 1800—aka Charlie’s Law—across the finish line. And on September 30, 2022, Governor Newsom signed it. The law takes effect in 2027.
Since the legislation was introduced, advocates in New York, Louisiana and North Carolina have reached out to Huang for his help in passing laws to increase bone marrow donors in those states too.
cancerhealth.com SUMMER 2023 CancerHealth 13
Oral, Mouth and Throat Cancers
WHETHER THEY’RE LABELED AS “HEAD AND NECK, “OROPHARYNGEAL,”
“mouth and throat” or simply “oral,” these cancers generally begin in squamous cells, a flat cell found in skin and the linings of the body, such as the respiratory and digestive tracts. These types of cancers, often linked to tobacco use and human papillomavirus (HPV), may affect the voice box, nose, lips, mouth and upper and lower throat. Visit these websites for statistics, symptoms, treatments, support groups, videos, pamphlets, patient resources and more.
American Head and Neck Society (AHNS)
ahns.info
AHNS aims to advance education and research about head and neck cancers to improve quality of life for affected patients. The AHNS site offers educational webinars, video interviews with cancer survivors, a physician database and more.
CancerCare
cancercare.org
CancerCare provides a basic introduction on head and neck cancers and information on treatment options, side effects and pain management. Oncology social workers offer support via the free Hopeline at 800-813-HOPE (4673).
Cancer Lifeline
cancerlifeline.org
Cancer Lifeline seeks to optimize quality of life for people living with cancer. Its monthly oral, head and neck cancers support group features expert speakers who discuss various topics, such as movement for stimulating lymphatic flow, which can be an effective tool for managing cancer symptoms.
Cancer.Net
cancer.net
Published by the American Society of Clinical Oncology, Cancer.Net features robust sections on oral and head and neck cancers with data on staging, treatments, clinical trials, survivorship and more.
Head and Neck Cancer Alliance (HNCA)
headandneck.org
HNCA’s site aims to serve as a “one-stop center for patients, survivors and family members seeking support and information.” Online offerings include a clinical trial finder, a self-exam guide and a support community.
Memorial Sloan Kettering Cancer Center (MSKCC) mskcc.org
In addition to counseling services, MSKCC offers myriad resources, including advice for managing such symptoms as difficulty swallowing, dental changes and loss of speech.
National Cancer Institute
cancer.gov
This site offers cancer fact sheets, statistics, treatments, ongoing
research and more, including pages devoted to oral and head and neck cancers.
National Institute of Dental and Craniofacial Research (NIDCR)
nidcr.nih.gov
NIDCR’s website features an oral cancer section that includes information on causes, symptoms and treatment as well as downloadable PDF guides, such as “Detecting Oral Cancer.”
Oral Cancer Foundation (OCF)
oralcancerfoundation.org
The OCF website provides research updates, advocacy and more, including a calendar of free oral cancer screenings and a support forum with a message board and chat room.
Support for People with Oral
and Head and Neck Cancer (SPOHNC)
spohnc.org
With more than 100 chapters throughout the country, SPOHNC organizes support groups and awareness events and offers resources such as webinars and books about clinical trials.
RESOURCES BY LAURA SCHMIDT Discover more resources: cancerhealth.com/resources 14 CancerHealth SUMMER 2023 cancerhealth.com
BY LAURA SCHMIDT
FUN IN THE SUN
Products that protect skin and enlighten minds
Struggling to find a sunscreen that meets your unique needs?
La Roche-Posay makes a wide range of products recommended by dermatologists. The Anthelios High SPF Face & Body Sunscreen Set ($55) includes an SPF 100 melt-in-milk sunscreen for skin that burns easily and a UV Correct SPF 70 antiaging lotion. For children, the SPF 50 Anthelios Kids Gentle Lotion Sunscreen ($33) is water resistant for up to 80 minutes with no white cast.
Erica Sullivan founded Low Ultraviolet (L.U.V.) clothing with ultraviolet protection factor (UPF) 50+ in 2019, just one year after her mom was diagnosed with progressive cases of malignant melanoma. Her aim was to help raise awareness of skin cancer among young people while also offering both men and women fashionable sun-safe clothing options.
L.U.V.’s pretty Sea Glass Top ($42), for example, uses microfiber fabric to wick, cool and protect, while the versatile Carbon UPF 50+ Gaiter provides face and neck coverage for worry-free outdoor activities.
Not all clothing protects equally against the sun. White cotton, for example, allows more UV rays to pass through. To maximize your protection, add Rit Dye’s SunGuard ($7) to your laundry. Recommended by the Skin Cancer Foundation and the Melanoma Research Alliance, SunGuard invisibly adds UPF 30 to clothes and is safe for sensitive skin.
tion’s
company to
Coolibar sure knows about sun protection. For 20 years, the Minnesota-based company has developed high-quality, sun-safe clothing, including great options for kids and babies. Plus, it was the first sun-protective clothing company to receive the Skin Cancer Foundation’s Seal of Recommendation. Cover up the little ones at the pool or beach with its Baby Guppy Ruffle Rash Guard Set or Baby Wave Rash Guard Set ($29.99 to $45) with UPF 50+ protection that blocks 98% of UVA/UVB rays and never washes out. Complete the look with the Baby Linden Sun Bucket Hat UPF 50+ ($26).
Cover up the little ones at (he was after experiencing pain in his back) A market researcher turned
Want an unconventional beach read? Try this memoir from David Chill. A physically active nonsmoker, Chill was shocked to learn in 2012 at age 55 that he had Stage IV lung cancer (he was diagnosed after experiencing pain in his back). A market researcher turned bestselling author, Chill recounts the resultant odyssey in Stage 5. Through conversational prose, the book offers insights not just on cancer—such as information about biomarker testing and clinical trials—but also on life with cancer, including raising a family and dealing with illness (and ageism) in the workplace.
Find more products to make life easier: cancerhealth.com/good-stuff
(CHILL) COURTESY OF DAVID CHILL
cancerhealth.com SUMMER 2023 CancerHealth 15
GOOD STUFF
Anthelios SPF
SOLUTIONS BY SAMI
MANSFIELD
Lifting the Brain Fog
Cancer treatment may lead to cognitive impairment, such as memory loss and trouble concentrating. But you can mend your mind.
WE’VE ALL EXPERIENCED THE FRUSTRATION and embarrassment of forgetting a name. While cognitive decline is an acknowledged aspect of the aging process, mental impairment, such as trouble concentrating, confusion and memory loss, can also occur during periodic stress, including illness. It’s so common during cancer treatment that there’s a phrase for it—chemo brain—and it can last as long as a year after treatment.
Chemo brain is usually not caused by meds directly harming the brain—most chemotherapy drugs cannot cross the blood-brain barrier. Instead, cognitive side effects may result from fatigue, inflammation and stress on the body and
mind. Such problems can arise from radiation, surgery and other aspects of cancer treatment. Poor sleep, inactivity and an unhealthy diet can worsen cognitive function.
Conversely, taking small but consistent actions and engaging in healthy lifestyle behaviors can help you prevent, mitigate and recover from chemo brain. Plus, doing so can boost your quality of life, lower your risk for chronic disease and improve your overall well-being. To further help lift brain fog, try the five steps below. Start slow—don’t undertake all at once—and use reminders such as alarms and Post-it notes or ask your loved ones and caregivers to keep you accountable.
Start Your Day in the Light
Your morning routine is one of the critical bookends of your sleep routine. Getting sunlight (or even switching on your lights) within 20 minutes after waking helps reset our circadian rhythm, prepares us for the next night’s sleep and stimulates our brain to produce serotonin (our feel-good hormone), setting us up for a better day.
Drink Up!
Our bodies lose water overnight through the humidity in our breath—and through our skin and sweat—which means we wake up a little dehydrated. While caffeine can get us going, so can water. Daily fluid needs vary from person to person, but hydration keeps us all energized and healthy.
Time Your Inactivity
While it may feel good to relax on the couch, if you shut down your brain and body too long, it’s harder to start back up. Set your timer for one hour when you need rest. When it goes off, do something for one minute that is either physical or mental. Get moving or tackle one task on your to-do list, then rest for the next hour.
Minimize Sugar and Highly Processed Foods
Fast food, sodas, desserts and candy lack omega fats, B vitamins and fiber—nutrients that support brain health. They lead to inflammation, energy highs and lows, and weight gain. Reduce these to one to two meals or snacks per week. Ultraprocessed foods are also linked to a higher risk for cancer.
Train Your Brain
Engage your noggin with fun games that challenge your creativity, memory and decision-making skills. Try puzzles, cards or coloring games on an app (many are available for free) or at your kitchen table. Websites such as Lumosity.com and BrainHQ.com offer researchbased cognitive training resources.
16 CancerHealth SUMMER 2023 cancerhealth.com
COPE WITH CANCER
Dealing with cancer can be physically, mentally and emotionally challenging, and everyone handles it differently. Please take our survey and let Cancer Health know about your coping mechanisms.
Which of the following do you use to cope with cancer? (Check all that apply.)
❑ Acupuncture ❑ Prayer
❑ Deep breathing ❑ Reiki
❑ Massage ❑ Yoga
❑ Meditation ❑ Other: ______________
❑ None of the above
Do you rely on family and friends to cope with cancer?
❑ Yes ❑ No
Have you sought professional help to cope with cancer?
❑ Yes ❑ No
Have you ever attended a support group to cope with cancer?
❑ Yes ❑ No
Do you regularly exercise and maintain a healthy diet to cope with cancer?
❑ Yes ❑ No
Do you turn to religion or a spiritual practice to cope with cancer?
❑ Yes ❑ No
Do you use humor to cope with cancer?
❑ Yes ❑ No
Do you spend time doing activities you enjoy to cope with cancer?
❑ Yes ❑ No
Do you seek out art to cope with cancer?
❑ Yes ❑ No
Do you turn to alcohol or drugs to cope with cancer?
❑ Yes ❑ No
How often do you use coping mechanisms to deal with cancer?
❑ Frequently ❑ Rarely
❑ Sometimes ❑ Never
How helpful are your coping mechanisms?
❑ Very helpful ❑ Not very helpful
❑ Somewhat helpful
What year were you born?
What is your gender?
❑ Male ❑ Transgender
❑ Female ❑ Other
What is your current level of education?
❑ Some high school
❑ High school graduate
❑ Some college
❑ Bachelor’s degree or higher
What is your ethnicity? (Check all that apply.)
❑ American Indian/Alaska Native
❑ Arab/Middle Eastern ❑ Asian
❑ Black/African American ❑ Hispanic/Latino
❑ Native Hawaiian/Pacific Islander
❑ White ❑ Other _________________________
What is your ZIP code?
Scan this QR code with your smartphone to take this survey at cancerhealth.com/surveys. Or email a photo of your completed survey to website@cancerhealth.com.
ISTOCK SURVEY
IN THE SEARCH FOR A CURE, THEY KNOW EXACTLY WHERE THEY STAND. ON THE SHOULDERS OF GIANTS.
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