Cancer Health Summer 2024

Golfer Jim Plotkin

CLL doesn’t keep golfer Jim Plotkin off the course.

Cancer Health Stories

5HDGWKHƓUVW person stories

RISHRSOHZKR are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories

Basics

:KHWKHU\RXōUH newly diagnosed RUDORQJWHUP survivor, check out our Basics section on cancer treatment, how to PDQDJHVLGHHIIHFWVDQGPRUH cancerhealth.com/basics

Science News

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

Cancer Health Digital

Scan the QR FRGHOHIW with your smartphone to check out the digital LVVXHRI Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.

12 PLAYING WITH CANCER

When Jim Plotkin was diagnosed with chronic lymphocytic leukemia, his sports hobbies helped him through it. BY JENNIFER

18 THE 2024 CANCER HEALTH 25

COOK

)RURXUƓIWKDQQXDOIHDWXUHZHKLJKOLJKWDQDUUD\RISHRSOH who power clinical trials. BY THE CANCER HEALTH STAFF

2 From the Editor Research & Rewards

4 News

Worried about losing your pet? | participation in research | public disclosures | patient navigation

6 Care & Treatment

$ORRNDWYDFFLQHVIRUKDUGWRWUHDW cancers | injections may replace LQIXVLRQV| FDA OKs two novel immunotherapies | accelerated approvals may not measure up

8 Basics

Take these steps to prevent cancer.

9 Voices

0HJDQ&ODLUH&KDVHōVWXPXOWXRXV VHYHQ\HDUUHODWLRQVKLSZLWK1('

10 Diary: A Double Cure

Paul Edmonds had HIV and AML.

26 Can Heal

What helps Bishop Stacey S. Latimer on his prostate cancer journey

28 Your Team

Get attuned to music therapy.

29 Resources

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30 Solutions

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32 Good Stuff

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33 Reader Survey

Share your clinical trial experience.

Research & Rewards

YOU COULD MAKE THE CASE THAT HYHU\LVVXHRI&DQFHU+HDOWKFKDPSLRQV FOLQLFDOWULDOV$IWHUDOOWULDOVOHDGWRWKH SUHYHQWLRQLQWHUYHQWLRQVVFUHHQLQJV WUHDWPHQWVDQGFDUHZHUHO\RQDQG write about. But our summer 2024 issue puts clinical trials front and center.

2XUƓIWKDQQXDO&DQFHU+HDOWK IHDWXUHKLJKOLJKWVSHRSOHZKRSRZHU FOLQLFDOWULDOV7XUQWRSDJHWRPHHW DQDVWRXQGLQJDUUD\RIVFLHQWLVWV DFDGHPLFVDGYRFDWHVGRFWRUVRQFRORJ\QXUVHVSDWLHQWQDYLJDWRUVDQG RIFRXUVHSHRSOHZLWKFDQFHU7KH breadth of talent and the time devotHGWRFOLQLFDOWULDOVLVWUXO\DZHVRPH

Our Care & Treatment section on SDJHH[SORUHVQRYHOLPPXQRWKHUDSLHVDQGƓQGLQJVRQYDFFLQHVIRUKDUG WRWUHDWFDQFHUVŋDGYDQFHVWKDWZRXOG not be possible without clinical trials.

,QWKH&DQ+HDOFROXPQSDJH %LVKRS6WDFH\6/DWLPHUVKDUHVKLV H[SHULHQFHVDVDFXUUHQWSDUWLFLSDQW in a trial to treat his metastatic prosWDWHFDQFHU$VDJD\%ODFNPDQZKR KDVOLYHGZLWK+,9VLQFHWKHVKH RIIHUVXQLTXHLQVLJKWVRQVXUYLYRUVKLS ,QDKDSS\FRLQFLGHQFHŋVXPPHU PDUNV/*%743ULGHVHDVRQŋZHDOVR SURƓOHDQRWKHULQVSLULQJJD\PDQ 3DXO(GPRQGV+HUHFHLYHGDVSHFLDO W\SHRIVWHPFHOOWUDQVSODQWWKDWFXUHG ERWKKLV+,9DQGOHXNHPLD7XUQWR RXU'LDU\RQSDJHWROHDUQPRUH

Clinical trials provide data needed for treatments to receive approval

IURPWKH)RRGDQG'UXJ$GPLQLVWUDWLRQ0DQ\SHRSOHZLWKFDQFHUGHYHORS UHVLVWDQFHRUH[SHULHQFHVLGHHIIHFWV IURPWKHLUPHGVVRWKH\UHO\RQD

robust pipeline of new options. In our FRYHUSURƓOHRQSDJH-LP3ORWNLQ DJROIHUOLYLQJZLWKFKURQLFO\PSKRF\WLFOHXNHPLDLOOXVWUDWHVKRZVZLWFKLQJ WRDQHZWKHUDS\FDQEHWWHU\RXUOLIHŋ DQGHYHQERRVW\RXUJDPH 2IFRXUVH)UDQFLV&ROOLQV0' 3K'DIRUPHUGLUHFWRURIWKH1DWLRQDO ,QVWLWXWHVRI+HDOWKVXSSRUWVFOLQLFDO WULDOVVHHRXU1HZVURXQGXSRQSDJH %XWDIWHUKLVRZQFDQFHUGLDJQRVLV Collins joined a clinical trial himself. Now that’s an endorsement! +DYH\RXSDUWLFLSDWHGLQDFOLQLFDO WULDO",IVRWXUQWRSDJHDQGVKDUH \RXUH[SHULHQFHVLQRXU6XUYH\

TRENT STRAUBE Editor-in-Chief trents@cancerhealth.com

X: @trentonstraube

Cancer Health

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Trent Straube 0$1$*,1*(',725 Jennifer Morton 6&,(1&((',725 Liz Highleyman (',725$7/$5*( Bob Barnett NEWS WRITERS

Sukanya Charuchandra; Laura Schmidt &23<&+,() Joe Mejía $57',5(&725 Doriot Kim $57352'8&7,210$1$*(5 Michael Halliday $'9,625<%2$5' Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; Timothy Henrich, MD; Carl June, MD; Leigh Leibel, MSc; Yung Lie, PhD; Gilberto Lopes, MD; Jennifer L. McQuade, MD; Amelie Ramirez, DPH; Hope Rugo, MD; Kelly Shanahan, MD; Carla Tardif )(('%$&. Email: info@cancerhealth.com

SMART + STRONG 35(6,'(17$1'&22 Ian E. Anderson (',725,$/',5(&725 Oriol R. Gutierrez Jr. &+,()7(&+12/2*<2)),&(5 Christian Evans 9,&(35(6,'(17 ,17(*5$7('6$/(6 Diane Anderson ,17(*5$7('$'9(57,6,1* 0$1$*(5 Jonathan Gaskell ,17(*5$7('$'9(57,6,1* &225',1$725 Sarah Pursell 6$/(62)),&( 212-938-2051 sales@cancerhealth.com %8/.68%6&5,37,216 order.cancerhealth.com or subs@cancerhealth.com

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CANCER PATIENTS WORRY ABOUT LOSING THEIR PETS

The cost of caring for pets can be a big challenge, finds a survey by CancerCare’s Pet Assistance & Wellness Program.

We humans love our pets. Many of us consider them our best friends or close family members as well as a consistent source of support. Sadly, many people with cancer risk giving up their pets, mostly because of the costs associated with keeping them.

In fact, 87% of surveyed cancer patients with pets reported having trouble taking care of their pets because of the expense. And nearly half (44%) said they worried they might not be able to keep their pet. Some respondents (15%) valued their pets so much that they considered ending or pausing cancer treatment in order to keep them.

The survey was conducted by Cancer Care’s Pet Assistance & Wellness (PAW) Program, which helps folks diagnosed with cancer keep their EHORYHGSHWV7KH3$:3URJUDPRIIHUVƓQDQFLDODVVLVWDQFHDVZHOODV low-cost and free pet care services.

Other survey respondents faced different challenges caring for their pets, often stemming from cancer treatment side effects. For example, 67% had trouble maintaining pet care because they couldn’t walk, lift or bend down; 59% reported challenges walking their dog; and 86% QHHGHGKHOSVSHFLƓFDOO\WRFDUHIRUSHWV

$OWKRXJKRIUHVSRQGHQWVUHŴHFWHGWKDWWKHLUSHWZDVH[WUHPHO\ LPSRUWDQWWKURXJKRXWWKHLUFDQFHUGLDJQRVLVPDQ\DOVRVDLGWKHƓQDQFLDO burden could be overwhelming. “Vet expenses are hard when paying for all the ‘extras’ that come along with cancer (e.g., vitamins, OTC creams, protein drinks),” Cancer Care client Rob said.

87%

Of cancer patients with pets reported having trouble caring for their pets due to cost.

He’s not alone. Over three quarters (77%) of survey respondents said they found it GLIƓFXOWRULPSRVVLEOHWRPDQDJHWKHFRVW of pet food, and 78% said the same about visits to the vet. (Over 90% of these individXDOVVDLGWKH\GLGQRWH[SHULHQFHƓQDQFLDO problems regarding pet care before they were diagnosed with cancer.)

“If it was not for my grant from Cancer Care for Angel, I do not know if I would have been able to keep her,” Karen, a client of the program, shared in the report on the survey. “I am so blessed to have her. She is my rock WKDWNHHSVPHƓJKWLQJIRUP\OLIH,KDYHQRZ lived four years longer than was thought, and I owe a lot to Angel for being there for me.”

1 in 5

People with cancer participate in some form of clinical research.

Because patients play a vital role in cancer research, scientists from the Fred Hutchinson Cancer Center, the American Cancer Society Cancer Action Network and related organizations decided to assess current trends in research participation. The results?

Nearly 22% of people with cancer reported participation in studies, including treatment trials and quality-of-life studies. What’s more, enrollment in cancer treatment trials was 7.1%, a notably higher rate than earlier estimates of 2% to 3%. “These contributions are much more extensive than was previously recognized,” writes Joseph Unger, PhD, MS, a health services researcher and biostatistician at Fred Hutch and the study’s lead author. “Cancer clinical research is a true partnership between those with cancer and those who study and treat cancer.”

Get more cancer news: cancerhealth.com/news

VERY PUBLIC DISCLOSURES

<RXFRXOGVD\)UDQFLV&ROOLQV0'3K'WDONVWKH talk and walks the walk. In an April 12 op-ed in The Washington Post, the former director of the National Institutes of Health disclosed he had aggressive prostate cancer.

+HZURWHŏ:K\DP,JRLQJSXEOLFDERXWWKLV FDQFHUWKDWPDQ\PHQDUHXQFRPIRUWDEOHWDONLQJ about? Because I want to lift the veil and share OLIHVDYLQJLQIRUPDWLRQDQG,ZDQWDOOPHQWREHQHƓW from the medical research to which I’ve devoted P\FDUHHUDQGWKDWLVQRZJXLGLQJP\FDUHŐ

Collins shared that he had been on “active VXUYHLOODQFHŐIRUDVORZJURZLQJSURVWDWHFDQFHU IRUƓYH\HDUVDFRPPRQVFHQDULR,QGHHGRI PHQRYHUKDYHORZJUDGHSURVWDWHFDQFHUPDQ\ never know it, and few develop advanced disease).

During this time, he wrote, “to contribute to knowledge and receive expert care, I enrolled in a clinical WULDODWWKH1DWLRQDO,QVWLWXWHVRI+HDOWKWKHDJHQF\ ,OHGIURPWKURXJKODWHŐ

He has since undergone a radical prostatecWRP\UHPRYDORI the entire prostate

More people with cancer will be able to receive the support and guidance of patient navigators, thanks to the White +RXVHōV&DQFHU0RRQVKRW6SHFLƓFDOO\ seven major insurance companies are expanding coverage to include patient navigators, and over 40 comprehensive FDQFHUFHQWHUVDQGFRPPXQLW\RQFRORJ\SUDFWLFHVDUHWDNLQJVWHSVVXFKDV using updated navigation and billing codes) to ensure that patient navigation services DUHFRYHUHG:KDWōVPRUHDWWKHVWDUWRIWKLV\HDU Medicare began covering more navigation services. ŏ1DYLJDWRUVJXLGHIDPLOLHVWKURXJKHYHU\VWHSRI WKHLUFDQFHUMRXUQH\ŐQRWHVWKH:KLWH+RXVH “Navigators have been shown to improve health RXWFRPHVDQGWKHSDWLHQWH[SHULHQFHE\UHGXFLQJ times between diagnosis and treatment and increasing treatment completion. These services

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In other headline-making disclosures, actress Olivia Munn, 43, shared via social media and then a 3HRSOHPDJD]LQHFRYHUVWRU\WKDWODVW\HDUVKHZDV diagnosed with breast cancer and had a double PDVWHFWRP\6KHXVHGWKHVSRWOLJKWWRUDLVHDZDUHness of the screening tool that led to her diagnosis.

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A BOOST FOR PATIENT NAVIGATION

DOVRORZHUKHDOWKFDUHFRVWVE\UHGXFing ER visits and hospitalizations and reduce health disparities, including E\IDFLOLWDWLQJDFFHVVWRVHUYLFHVWR address unmet social determinants of health, such as food and housing LQVHFXULW\DQGWUDQVSRUWDWLRQQHHGVŐ The Cancer Moonshot refers to health initiatives that Vice President Biden launched in 2016 and that the Biden-Harris administration reignited in 2022. It’s estimated that more than 2 million people will be diagnosed with cancer in 2024, according to WKH$PHULFDQ&DQFHU6RFLHW\7KH0RRQVKRWDLPV to reduce the cancer death rate in the United States E\DWOHDVWKDOIE\SUHYHQWPRUHWKDQPLOOLRQ cancer deaths and improve the experience of those WRXFKHGE\FDQFHU$V%LGHQKDVVDLGWKHJRDOLVWR end cancer as we know it.

Olivia Munn and Francis Collins

Vaccines for Hard-to-Treat Cancers

Custom-made vaccines that train the immune system to recognize a patient’s tumor continue to show promise for hard-to-treat malignancies, researchers reported at the American Association for Cancer Research Annual Meeting. Cancer vaccines previously fell out of favor after disappointing study results, but now, a better understanding of how the immune system responds to cancer has renewed hopes that they could halt disease progression, delay recurrence and perhaps even offer a cure.

One early trial found that pancreatic cancer patients who responded well to BioNTech and Genentech’s personalized mRNA vaccine, dubbed autogene cevumeran, plus the checkpoint inhibitor Tecentriq (atezolizumab) and chemotherapy after surgery continued to have a lower risk for recurrence three years later. Eight of the 16 patients developed strong T-cell responses against tumor neoantigens. Two of the eight responders relapsed, compared with seven of the eight nonresponders.

Another Phase I study evaluated Transgene’s TG4050, which employs a poxvirus vector to deliver WXPRUQHRDQWLJHQVVHOHFWHGXVLQJDUWLƓFLDOLQWHOOLgence tools. None of the 16 head and neck cancer patients who received the vaccine immediately after

surgery, radiation and chemotherapy experienced recurrence during 18.6 months of follow-up.

A third trial tested Geneos Therapeutics GNOS-PV02, a DNA plasmid vaccine that encodes up to 40 selected tumor neoantigens plus interleukin 12. Of the 36 people with advanced liver cancer who received the vaccine plus Keytruda (pembrolizumab), 31% experienced tumor shrinkage. This is about double the response rate of patients treated with a checkpoint inhibitor alone in other studies. Treatment was intended to last for two years, but the median duration of response was not reached, and the study has been extended. Finally, Diakonos Oncology’s DOC1021, an engineered dendritic cell vaccine, may extend survival for people with glioblastoma brain cancer. After a year of follow-up, 12 of 16 vaccine recipients (88%) were still alive, well beyond the survival rate with standard care. Diakonos takes a different approach, training a patient’s dendritic cells to recognize their tumor antigens. According to the company, this “tricks the body into perceiving cancer cells as virally infected cells, mirroring the natural detection and elimination process for viral infections.”

CAN INJECTIONS REPLACE INFUSIONS?

Patients treated with immune checkpoint inhibitors may soon be able to get brief subcutaneous injections rather than intravenous infusions. Currently, these monoclonal antibodies are administered at an infusion center, a procedure that usually takes around half an hour.

Researchers recently reported that people with advanced kidney cancer who were randomly assigned to receive an injectable formulation of Opdivo (nivolumab) had drug concen-

WUDWLRQVVDIHW\SURƓOHVDQG response rates similar to those of patients who received the drug by IV infusion. The injections cut treatment time from 30 minutes

WROHVVWKDQƓYHPLQXWHV

Studies have also yielded promising results for injectable versions of Keytruda (pembrolizumab) and Tecentriq (atezolizumab); the latter is already approved in the United Kingdom. Injectable checkpoint inhibitors could be administered DWDORFDOGRFWRUōVRIƓFHPDNLQJ

treatment more convenient and accessible.

“Having the option to administer immunotherapy subcutaneously could undoubtedly reduce the treatment burden that patients diagnosed with cancer currently face as well as help PD[LPL]HHIƓFLHQFLHVZLWKLQ health care systems,” says Saby George, MD, of Roswell Park Comprehensive Cancer Center.

FDA OKs TWO NOVEL IMMUNOTHERAPIES

The Food and Drug Administration recently approved two new types of cancer immunotherapy.

,RYDQFHōV$PWDJYLOLƓOHXFHO WKHƓUVWWXPRULQƓOWUDWLQJO\PSKR F\WH7,/WKHUDS\ZDVJUDQWHG accelerated approval for advanced melanoma after nearly 40 years of UHVHDUFKRQ7FHOOWKHUDSLHVIRU solid tumors. While many T cells are unable to get LQVLGHWXPRUV7,/VKDYHSURYHQFDQFHUƓJKWLQJ DELOLW\7FHOOVDUHFROOHFWHGIURPDSDWLHQWōVWXPRU multiplied in a lab and infused back into the body.

In a Phase II analysis of 73 patients with previously WUHDWHGLQRSHUDEOHRUPHWDVWDWLFPHODQRPDWKH RYHUDOOUHVSRQVHUDWHZDVLQFOXGLQJWKUHH SHRSOHZLWKFRPSOHWHUHVSRQVHV$PRQJWKH UHVSRQGHUVZHUHVWLOODOLYHZLWKRXWGLVHDVH progression at 12 months.

“This approval is transformative for the entire UHVHDUFKƓHOGDQGVXSSRUWVFRQWLQXHGLQYHVWLJDWLRQ of TIL cell therapy across additional types of solid WXPRUVŐVD\V7,/SLRQHHU6WHYHQ5RVHQEHUJ0' of the National Cancer Institute.

ImmunityBio’s Anktiva (nogapendekin alfa

LQEDNLFHSWWKHƓUVWLQWHUOHXNLQ DJRQLVWZDVDSSURYHGIRUSHRSOH ZLWKQRQPXVFOHLQYDVLYHEODGGHU cancer. The treatment activates both T cells and natural killer cells to attack WXPRUV:KDWōVPRUHLWVWLPXODWHV WKHSURGXFWLRQRIPHPRU\7FHOOV OHDGLQJWRDORQJODVWLQJUHVSRQVH ,QD3KDVH,,,,,WULDORISDWLHQWV the complete response rate was 62%. Among those ZLWKDFRPSOHWHUHVSRQVHKDGDGXUDWLRQ RIUHVSRQVHODVWLQJDWOHDVWRQH\HDUDQGGLG so for at least two years.

'D\VDIWHUWKHEODGGHUFDQFHUDSSURYDO ,PPXQLW\ %LRDQQRXQFHGWRSOLQHUHVXOWVIURP another Phase II trial showing that Anktiva plus a checkpoint inhibitor nearly doubled overall survival IRUSHRSOHZLWKQRQVPDOOFHOOOXQJFDQFHU The treatment is also being explored for several other types of cancer and even for HIV.

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Do Accelerated Approvals Measure Up?

Only four out of 10 cancer drugs granted accelerated approval by the Food and Drug Adminis WUDWLRQ)'$GHPRQVWUDWHGD FOLQLFDOEHQHƓWLQIROORZXSWULDOV researchers recently reported.

The FDA may grant accelerat ed approval based on surrogate PDUNHUVVXFKDVRYHUDOOUH VSRQVHUDWHRUSURJUHVVLRQIUHH survival. These therapies are expected to undergo further WHVWLQJWRFRQƓUPWKDWWKH\GR LQIDFWRIIHUFOLQLFDOEHQHƓWV

such as improved overall survival or better quality of life. Of the 129 indications that received accelerated approval GXULQJŋZHUH converted to regular approval.

2IWKHVHZHUHFRQ YHUWHGEDVHGRQRYHUDOOVXUYLYDO meaning 60% were based on surrogate measures. Among 46 indications with more than ƓYH\HDUVRIIROORZXSRQO\ 20 demonstrated a clinical EHQHƓWLQFRQƓUPDWRU\WULDOV

“Patients should be clearly in formed about the cancer drugs that use the accelerated approval path way and do not end up showing ben HƓWVLQSDWLHQWFHQWHUHGFOLQLFDO RXWFRPHVŐ,DQ/LX0'-' 03+RI%ULJKDPDQG:RPHQōV +RVSLWDODQGFROOHDJXHV concluded.

Cancer Prevention

You can take several steps to reduce your risk for cancer.

CANCER DEVELOPS WHEN normal cells grow out of control. This usually happens because of genetic changes, especially mutations of genes that play a role in cell multiplication and repair.

Certain cancer risk factors can’t be controlled, including age and family history. Others, like smoking, are simple to avoid— but simple doesn’t necessarily mean easy! Some risk factors

DUHLQŴXHQFHGE\DFRPELQDWLRQ of genetics, environment and behavior. Finally, many cancers are attributable to random mutations that accumulate over time.

Smoking

Smoking is responsible for around 30% of all cancer deaths in the United States. In addition to lung cancer, tobacco use can also contribute to a dozen other malignancies. Nicotine is addictive, and quitting smoking can be FKDOOHQJLQJ6RPHSHRSOHƓQG nicotine gum or patches, prescription medications or support groups helpful. The sooner you stop smoking, the better, but TXLWWLQJLVEHQHƓFLDODWDQ\DJH

Alcohol

Alcohol has been linked to cancers of the mouth and throat, esophagus, breast, colon, pancreas and stomach. Heavy drinking can cause cirrhosis, a major risk factor for liver cancer. The American Cancer Society recommends no more than two

drinks per day for men or one drink per day for women.

Sun Exposure

Exposure to ultraviolet (UV) radiation from the sun or tanning beds is the major risk factor for skin cancer, including melanoma. Reduce exposure by staying out of the sun during midday and covering up with long sleeves and pants, a hat and sunglasses. Sunscreen with a high sun protection factor, or SPF, offers more protection, but even the best sunscreen doesn’t completely block all harmful radiation.

Diet and Exercise

A healthy diet and regular physical activity can reduce cancer risk. People with overweight or obesity are at higher risk for at least 13 different malignancies. The American Cancer Society recommends a well-balanced diet with plenty of vegetables, fruits and whole grains. Guidelines recommend that adults should get at least 150 minutes of moderate-intensity activity or 75 minutes of vigorous activity each week—but even EULHIH[HUFLVHLVEHQHƓFLDO

Viral Infections

Some types of cancer are caused by viruses or bacteria. Human papillomavirus (HPV) is the main cause of cervical cancer, anal

cancer and some oral cancers. HPV is commonly sexually transmitted, but it can also spread via nonsexual skin-to-skin contact. The Gardasil 9 vaccine protects against nine types of HPV. Guidelines recommend that adolescent girls and boys should be vaccinated at age 11 or 12, with eligibility continuing through age 27. Hepatitis B and C, two bloodborne infections, are major causes of liver cancer. The Centers for Disease Control and Prevention now recommends the hepatitis B vaccine for all adults regardless of risk. There is no vaccine for hep C, but it can be treated with antiviral medications that cure most people in two or three months.

Cancer Screening

Regular screening can detect cancer early, when it is easier to remove or treat. Experts recommend routine screening for breast cancer, cervical cancer and colon cancer as well as regular visual exams for skin cancer. Lung cancer and liver cancer screening are recommended for people at high risk. Prostate cancer screening is offered for older men based on their individual risk factors and preferences. Q

We Need to Talk About NED

A survivor of breast cancer with no evidence of disease (NED), Megan-Claire Chase, aka Warrior Megsie, recounts the turbulent relationship.

THERE WAS A TIME WHEN I proudly shouted from the rooftops, “I beat cancer,” “Fight like a girl” and “I’m in remission.” I IHOWEOLVVIRUWKHƓUVWVL[PRQWKV of my breast cancer survivorship until reality began to set in. I distinctly remember when my vocabulary shifted to no evidence of disease (NED). The more I processed the struggles, pain and stress caused by active treatment and the twoplus years of advocating for myself before receiving my invasive lobular carcinoma diagnosis, the more I realized this breast cancer path is ongoing. I call my blog Life on the Cancer Train because there’s no ƓQDOGHVWLQDWLRQZKHUHHYHU\thing will stop and I can get off and never look back.

To keep my sense of humor intact and grapple with survivorship, I like to think of NED as a relationship. Honestly, it’s the longest active relationship I’ve ever had. It has been quite turbulent, because I still don’t know this post-cancer body.

Fasten your seat belts, because here’s everything I have dealt with post-cancer: chemo-induced peripheral neuropathy (CIPN), infertility due to hysterectomy (removal of uterus, cervix and fallopian tubes), oophorectomy (removal of ovaries) due to high risk of ovarian cancer, secondary radiation rash on the left side of

the neck, contact dermatitis on eyelids (now allergic to dye in antibacterial soap), removal of fat necrosis in the lumpectomy area, removal of hematoma that attached to fat necrosis, loss of jobs and health insurance before COVID-19, racism in some private breast cancer groups, loss of job at the height of COVID-19, Grade III sprained ankle due to CIPN, medical bias and racism, resigning from jobs,

survivor and as a BLACK woman. I don’t need to be told, “You’re stronger than this” or “Just ignore them.”

RQVHWRIƓEURP\DOJLDRQVHW of back pain, loss of savings, RQJRLQJQDXVHDƓQDQFLDOWR[LFLW\ weight gain, constipation, depression, painsomnia, dizziness, anxiety, grief, PTSD and rage. I had to take a deep breath and wipe away some tears reading this list. This isn’t pretty or pink or fun.

This Is My Survivorship

Most people would never know how much I have been through and continue to go through because most of these are invisible. I’ve learned how to mask the daily pain, tighten my protective cloak and develop a much thicker skin to deal with the neverending racism, tokenism and oppression due to existing as not just a breast cancer survivor but as a BLACK breast cancer

I’m human and have feelings. I’m not a superwoman. I deserve… to be supported; to be believed; to be vulnerable; to be accepted; to be loved; to be heard; to rest.

It’s important to acknowledge that these added stressors and trauma are real, draining, discouraging and ongoing. I know I’ve accomplished so much as a patient advocate, subject matter expert, speaker, blogger, storyteller, activist, professional and more, but all of it has come at a cost. It’s a lot to take in, but this is my survivorship and daily existence. Q

Megan-Claire Chase writes about her highs and lows in the blog Life on the Cancer Train.

A Double Cure

Paul Edmonds received a special type of stem cell transplant that cured both leukemia and HIV.

Paul Edmonds, 68, of Desert Hot Springs, California, LVRQHRIRQO\ƓYHSHRSOHZKRKDYHEHHQFXUHG RI+,9DIWHUVWHPFHOOWUDQVSODQWVWRWUHDWEORRG FDQFHU7KHGRQRUVKDGDUDUHJHQHWLFPXWDWLRQ NQRZQDV&&5GHOWDWKDWSUHYHQWVWKHYLUXV IURPHQWHULQJFHOOV7KLVSURFHGXUHLVWRRULVN\IRU PRVWSHRSOHOLYLQJZLWK+,9ZKRGRQōWKDYHFDQFHU DQGDUHGRLQJZHOORQDQWLUHWURYLUDOWUHDWPHQW EXWWKHKDQGIXORIIXQFWLRQDOFXUHVRIIHUFOXHV DERXWPRUHZLGHO\DSSOLFDEOHDSSURDFKHV

September 1988

I was diagnosed with HIV in San Francisco at age 33, before effective antiretroviral treatment. My CD4 T-cell count was below 100, meaning I had AIDS. It was very scary and stigmatizing. At the time, most people were living no longer than two years after diagnosis. There were many nights of marches and protests to get the government to do something. I tried almost every drug that came out, including AZT, but the side effects were awful. I felt sick most of the time. I began painting— it served as a form of escapism. I focused on survival and not giving up.

Mid-1990s

I started on combination antiretroviral therapy when it became available. There were side effects, but they were greatly improved from those of the early HIV meds. It was like a night-and-day difference. My HIV viral load stayed undetectable for many years.

May 2014

I married my husband, Arnie House, at San Francisco City Hall, after having been together since 1992. He is HIV positive, and we’ve taken care of each other over the years, accompanying each other to doctor appointments, collaborating on

healthy diets and exercise regimens and discussing the pros and cons of different medications.

August 2018

I was diagnosed with myelodysplastic syndrome. My main symptom was fatigue. I think I was diagnosed early because I saw my HIV doctor every three months, and he saw my blood work plummet suddenly. I had planned to move to the Palm Springs area, and I was referred to City of Hope, where further testing showed that I had progressed to acute myeloid leukemia (AML). I felt like I had been here before with a near-fatal diagnosis. I lived day to day, not allowing myself to think about the worst-case scenario.

November 2018

I had heard of Timothy Ray Brown, who also had AML DQGZDVWKHƓUVWSHUVRQFXUHGRI+,9DIWHUDVWHP cell transplant from a donor with the CCR5-delta32 mutation. My doctors at City of Hope told me from the beginning that they would look for a donor with the rare mutation in the hopes of curing both leukemia and HIV. They searched the Be the Match donor registry and found someone within a month. %XWƓUVWWKHFDQFHUKDGWRJRLQWRUHPLVVLRQ That took three rounds of chemotherapy.

January 2019

0\$0/ƓQDOO\ZHQWLQWRUHPLVVLRQEXWWKHRULJLQDO donor was no longer available. Fortunately, they found a second donor with the same mutation. I felt as if I had won the lottery. At the time, only one person had been cured of HIV with this kind of transplant, but I had a lot of trust in my doctors, and I didn’t have huge options—the leukemia had to be dealt with. While I was in the hospital getting the AML in remission, the news about a second

Paul Edmonds and Arnie House at their wedding; with Adam Castillejo (left) and Marc Franke (center) at the Hawai’i to Zero Conference; with Jana Dickter (left) and Monzr Al Malki, two of his doctors at City of Hope

person cured with a CCR5-delta32 transplant came out.

February 2019

I received the stem cell transplant. At age 63, I was the oldest person, and the longest-living with HIV, to receive this kind of transplant. I received reduced-intensity chemotherapy and no radiation because of my age. The transplant itself was a simple infusion. I had heard from many SHRSOHKRZGLIƓFXOWFKHPRWKHUDS\ZDVEXWLW wasn’t as bad as I thought it could be. Certainly not as bad as the years on early HIV meds.

March–April 2019

I started feeling good rather quickly, but I stayed at a hotel near the hospital because I lived too far away should something go wrong. Arnie and friends from across the country came to stay with me during these two months because I couldn’t be by myself. I have a great support system. I had only minor graft-versus-host disease [when donor cells attack the recipient’s body], with mouth sores and dry eyes. Overall, I’ve been very fortunate.

March 2021

My AML was still in remission, and my HIV remained suppressed. My doctors and I decided to stop my antiretroviral treatment. We were planning to do so one year after the transplant, but then the COVID-19 pandemic hit, and I wanted to wait until I got a COVID vaccine. In the beginning, City of Hope sent someone to my house to do lab testing every week, then every two weeks. Now I get my HIV viral load monitored every three months.

July 2022

Repeated testing showed that I had no detectable HIV in peripheral blood cells [a marker of residual persistent virus] or gut biopsies from colonoscopies. My case was presented at the International AIDS Conference in Montreal. I chose to remain anonymous at the time and was known as the City of Hope Patient.

April 2023

I appeared on Good Morning America and in The Washington Post, New York Post and ABC News. I had always planned to go public with my story if the stem cell transplant was successful. I grew up LQDVPDOOWRZQLQ*HRUJLDDQGKDGDGLIƓFXOWWLPH coming out as gay. If I remained anonymous, I felt it would be like going back into the closet. My story is too important to keep to myself. It offers hope to those affected by HIV and researchers searching for a cure worldwide.

September 2023

I’ve met Adam Castillejo and Marc Franke, two of the other people cured of cancer and HIV with the same kind of stem cell transplant. We have Zoom get-togethers, and we were all together in public IRUWKHƓUVWWLPHDWWKH+DZDLōLWR=HUR&RQIHUHQFH in Honolulu.

May 2024

My AML is considered cured because it has been RYHUƓYH\HDUVVLQFHWKHVWHPFHOOWUDQVSODQW0\ +,9ZLOOEHFRQVLGHUHGFXUHGƓYH\HDUVDIWHUVWRSping antiretroviral treatment, so I have two more years to go. When I was diagnosed with HIV in 1988, I thought it was a death sentence—I never thought I would live to see the day that I no longer have HIV. I am going to be a strong advocate for HIV cure research. I’ve lived for half of my life with HIV, and I’m still very connected to the community and feel like I always will be. I want the researchers to study me and the others who were cured, like they did ZLWK7LPRWK\5D\%URZQVRZHFDQƓQGDFXUH that’s accessible to all. I also want to encourage people to sign up to be stem cell donors with Be the Match, especially people of color, because there are not enough donors.

Living with CLL, says Jim Plotkin, changed many of his attitudes, which improved his golf game.

When Jim Plotkin was diagnosed with chronic lymphocytic leukemia, his sports hobbies helped him through the rough patches.

BY JENNIFER COOK • PHOTOGRAPHY BY JIMMY GALT

LIKE MANY PEOPLE’S CANCER STORIES, JIM PLOTKIN’S STARTED WITH A seemingly innocuous symptom: bumps on his neck. His doctor felt them in early 2018 and sent Plotkin to an ear, nose and throat doctor, who said they weren’t big enough to biopsy and told him to return in a few months. He went back twice, but she never biopsied the bumps.

It was an auspicious year for Plotkin. After a decade-long hiatus from golf—during which he and his wife had two kids—the 63-year-old former pro golfer returned to the game and quali ed for “the biggest senior amateur tournament in the U.S. sponsored by the USGA,” he says. “ ey only had 156 people out of the whole world” at the August tournament in Eugene, Oregon. And more competitions were coming up. Living in Carlsbad, California, meant he could practice, play and compete year-round. at fall, however, he wasn’t feeling well. “I started to feel bad every other day, just kind of lethargic and foggy-headed, blah,” he says. “I remember thinking, I need to go see a doctor.” At an appointment in September, blood tests revealed low thyroid hormone levels; when the tests were repeated in October, his white blood cell count was high, and he was referred to a hematologist-oncologist for more testing. She told Plotkin that he probably had CLL, or chronic lymphocytic leukemia. CLL is a usually incurable cancer that starts in lymphocytes, a type of white blood cell, and can eventually spread to the lymph nodes, spleen, liver and elsewhere in the body.

But the year-end holidays were coming up, and Plotkin would have to wait an entire month to receive his test results. He spent time “stumbling around” the internet and getting scared by his ndings. “ e

rst thing you think about is, I can’t die now—my kids are too young. And then you think, I gotta see my kids get married. And then you think, I gotta see my grandkids,” he says.

In January 2019, Plotkin learned that the hematologistoncologist had been right: He did have CLL. A CT scan that showed swollen lymph nodes and a swollen spleen con rmed the diagnosis. “You have the good kind of cancer,” a young nurse in the doctor’s o ce told him. But all he could feel was disbelief and shock. e average age of people who are diagnosed with CLL is roughly 70, and he was only 57.

STAY FOCUSED ON DOING YOUR NORMAL LIFE.

KEEPING THINGS ON THE DOWN LOW

Plotkin didn’t want to tell anyone about his cancer diagnosis, although he’s not sure why. “I don’t know—maybe I was embarrassed,” he says. He told his wife but waited seven months to tell his teenage son and daughter so that the news wouldn’t disrupt their school year. As it was, when his daughter descended the stairs at home and saw her dad and mom looking serious, knowing that they wanted to talk, she said, “Don’t tell me you have cancer,” at which point both parents started to cry.

People living with CLL who see minimal changes in their blood counts and experience no symptoms usually don’t require immediate treatment but instead can be put on a watch-and-wait program of regular medical exams and blood work, sometimes inde nitely. But Plotkin’s cancer was more advanced, and the hematologistoncologist started him on two drugs right away—an oral targeted therapy combined with a monoclonal antibody given intravenously.

e side e ects—starting with bleeding—began almost immediately. During the day, when he walked, he would nd blood in his saliva if he spit; at night, his ears would bleed, leaving bloodstains on his pillow that he would discover in the morning. During the rst month, he also developed atrial brillation, a heart rhythm disorder that required a couple of di erent medications, which he

still takes. He was seeing the doctor so often that he had to cut back to part-time work at the employee testing business he owns and runs.

“I felt like my whole body was falling apart,” Plotkin says. “I had one thing after another going wrong. ere were a few other things besides the side e ects. It was a horrible year.

“Plus, it took me a year to accept I had CLL” he adds. “I would say to myself, like every day, you have CLL. But I just couldn’t get past thinking about it, thinking, I’m gonna die right away if I don’t get lucky.”

A CHANGE IN MEDS—AND OUTLOOK

After eight or nine months, feeling worn down by side e ects, Plotkin switched doctors and saw Michael Choi, MD, a CLL specialist at Moores Cancer Center at the University of San Diego, a National Cancer Institute–designated comprehensive cancer center. It was a fortuitous time to do so. In May 2019, the Food and Drug Administration had approved another targeted therapy for people with CLL, and Choi, a hematologist and medical oncologist, had been on the team researching this use of the drug.

Choi started Plotkin on this med along with a new monoclonal antibody. e di erence was striking: With only mild, manageable side e ects (cramps and diarrhea), he was able to remain on the drugs for the full course of treatment, which ended in September 2020.

What’s more, the change helped shift Plotkin’s perspective. Instead of thinking death was imminent, he acknowledged to himself that he had a chronic illness that could be managed. at, in turn, engendered a return to a kind of normalcy. “You have to stay focused on doing your normal life,” he says, and because “the medicines out there for CLL patients are great now,” that’s more doable than ever.

Plotkin had played and practiced golf throughout his treatments and realized that CLL was a boon to his game. Golfers often xate on their last bad shot, which can be a game-losing distraction. But Plotkin would think, Well, you have CLL, who cares if you hit a bad shot into the

IF YOU HAVE CLL, LET CALQUENCE

Important Product Information

YOU CAN FOCUS ON THE THINGS YOU’RE LOVING.

CALQUENCE is a prescription oral treatment for adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). May cause serious side effects including: serious infections, bleeding problems, decrease in blood cell count, new cancers, and heart rhythm problems. Some may lead to death. Tell your GRFWRULI\RXH[SHULHQFHLQIHFWLRQVVXFKDVŴXOLNHV\PSWRPVXQH[SHFWHGEOHHGLQJVXFKDVEORRGLQ\RXU VWRRORUXULQHRUKHDUWUK\WKPSUREOHPVVXFKDVIDVWRULUUHJXODUKHDUWEHDW8VHVXQSURWHFWLRQZKHQRXWVLGH

Please read Brief Summary of Prescribing Information on adjacent page.

www.FDA.gov/medwatch or

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PATIENT INFORMATION CALQUENCE

What is CALQUENCE?

® (KAL-kwens) (acalabrutinib) tablets

• CALQUENCE is a prescription medicine used to treat adults with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL).

It is not known if CALQUENCE is safe and effective in children.

Before taking CALQUENCE, tell your healthcare provider about all of your medical conditions, including if you:

• have had recent surgery or plan to have surgery. Your healthcare provider may stop CALQUENCE for any planned medical, surgical, or dental procedure.

• have bleeding problems.

• have or had heart rhythm problems.

• have an infection.

• have or had liver problems, including hepatitis B virus (HBV) infection.

• are pregnant or plan to become pregnant. CALQUENCE may harm your unborn baby and cause problems during childbirth (dystocia).

° If you are able to become pregnant, your healthcare provider may do a pregnancy test before you start treatment with CALQUENCE

° Females who are able to become pregnant should use effective birth control (contraception) during treatment with CALQUENCE and for 1 week after the last dose of CALQUENCE

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

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking CALQUENCE with certain other medications may affect how CALQUENCE works and can cause side effects. Especially tell your healthcare provider if you take a blood thinner medicine.

How should I take CALQUENCE?

• Take CALQUENCE exactly as your healthcare provider tells you to take it.

• Do not change your dose or stop taking CALQUENCE unless your healthcare provider tells you to.

• Your healthcare provider may tell you to decrease your dose, temporarily stop, or completely stop taking CALQUENCE if you develop certain side effects.

• Take CALQUENCE 2 times a day (about 12 hours apart).

• Take CALQUENCE with or without food.

• Swallow CALQUENCE tablets whole with a glass of water. Do not chew, crush, dissolve, or cut tablets.

• If you miss a dose of CALQUENCE, take it as soon as you remember. If it is more than 3 hours past your usual dosing time, skip the missed dose and take your next dose of CALQUENCE at your regularly scheduled time. Do not take an extra dose to make up for a missed dose.

What are the possible side effects of CALQUENCE?

CALQUENCE may cause serious side effects, including:

• Serious infections can happen during treatment with CALQUENCE and may lead to death. Your healthcare provider may prescribe certain medicines if you have an increased risk of getting infections. Tell your healthcare provider right away if you have any signs or symptoms of an infection, including fever, chills, or flu-like symptoms.

• Bleeding problems (hemorrhage) can happen during treatment with CALQUENCE and can be serious and may lead to death. Your risk of bleeding may increase if you are also taking a blood thinner medicine. Tell your healthcare provider if you have any signs or symptoms of bleeding, including blood in your stools or black stools (looks like tar), pink or brown urine, unexpected bleeding or bleeding that is severe or you cannot control, vomit blood or vomit that looks like coffee grounds, cough up blood or blood clots, dizziness, weakness, confusion, changes in your speech, headache that lasts a long time, or bruising or red or purple skin marks.

• Decrease in blood cell counts. Decreased blood counts (white blood cells, platelets, and red blood cells) are common with CALQUENCE, but can also be severe. Your healthcare provider should do blood tests to check your blood counts regularly during treatment with CALQUENCE.

• Second primary cancers. New cancers have happened in people during treatment with CALQUENCE, including cancers of the skin or other organs. Your healthcare provider will check you for skin cancers during treatment with CALQUENCE. Use sun protection when you are outside in sunlight.

• Heart rhythm problems (atrial fibrillation and atrial flutter) have happened in people treated with CALQUENCE. Tell your healthcare provider if you have any of the following signs or symptoms: fast or irregular heartbeat, dizziness, feeling faint, chest discomfort, or shortness of breath.

The most common side effects of CALQUENCE include headache, diarrhea, muscle and joint pain, upper respiratory tract infection, and bruising.

These are not all the possible side effects of CALQUENCE. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Please see full Prescribing Information, including Patient Information.

How should I store CALQUENCE?

• Store CALQUENCE at room temperature between 68°F to 77°F (20°C to 25°C).

Keep CALQUENCE and all medicines out of the reach of children.

General information about the safe and effective use of CALQUENCE.

Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use CALQUENCE for a condition for which it was not prescribed. Do not give CALQUENCE to other people, even if they have the same symptoms you have. It may harm them. You can ask your healthcare provider or pharmacist for more information about CALQUENCE that is written for health professionals.

What are the ingredients in CALQUENCE?

Active ingredient: acalabrutinib

Inactive ingredients:

Tablet core: low-substituted hydroxypropyl cellulose, mannitol, microcrystalline cellulose, and sodium stearyl fumarate.

Tablet coating: copovidone, ferric oxide yellow, ferric oxide red, hypromellose, medium-chain triglycerides, polyethylene glycol 3350, purified water, and titanium dioxide.

For more information, go to www.CALQUENCE.com or call 1-800-236-9933.

Distributed by: AstraZeneca Pharmaceuticals LP, Wilmington, DE 19850 CALQUENCE is a registered trademark of the AstraZeneca group of companies. ©AstraZeneca 2023. All rights reserved. US-83082 11/23

water? It’s not that important; go get it, and hit another one. “Golf is so hard, you’re gonna hit bad shots,” he says. “Tiger Woods hits bad shots. Everybody hits bad shots.”

His game improved as a result of his new attitude. “I’ve won ve individual and three team tournaments, and some of them are considered noteworthy wins,” he says, including the Northern California Golf Association Senior Championship in 2022, which he won by three shots—the only golfer to nish the tournament under par. At one point, he was ranked in the top 15 in the United States in the amateur golf senior division. His goal now is to stay competitive for the next ve or six years, so he keeps taking lessons and practicing.

He also returned to sur ng, a sport he had taken up at age 36 when he moved to Southern California. During treatment, “I was pretty weak. And when I paddled out and there was a decent amount of waves, I couldn’t make it, so I wouldn’t even try,” he says. Now, he gets out on the water regularly.

“Sur ng and golf are di erent types of hobbies,” Plotkin says. With sur ng, “I’m not keeping score. It doesn’t matter how bad I do—or only a little bit. And it’s kind of a Zen sport. When you’re out there, you rarely think about work. Riding a wave is a great feeling. After you’re done, the endorphins make you feel really good. I rode two great waves today, and I’ll remember those for a long time.”

On the other hand, “golf, to me, is work,” he adds. “People might not admit it, but it is. It’s very ful lling because when you achieve your goal of doing well, you feel great. But if you’re playing tournament golf, you’re grinding out there. It’s not like sur ng—sur ng’s fun. It’s the greatest sport I’ve ever done.”

“I HAVE TIME”

HOW TO SURVIVE AND THRIVE WITH CLL

Jim Plotkin offers the following tips to anyone diagnosed with chronic lymphocytic leukemia (CLL). They are things he wishes he’d known or done as well as advice from his own life experiences.

• Look for a CLL specialist. One of Plotkin’s regrets is WKDWKLVƓUVWKHPDWRORJLVWRQFRORJLVWGLGQōWVSHFLDOL]HLQ CLL. He recommends seeing a CLL specialist, even if it’s RQO\IRUDFRQVXOWDWLRQDQGHYHQLI\RXKDYHWRŴ\WRWKH appointment. “They’re experts on CLL,” he says. “That’s all they do.” And that means they’ll be well versed in all of the latest treatments.

• Use only the best internet sources. “There’s a lot of bad information out there,” he says, as well as outdated GDWDŋIRUH[DPSOHWKHUHDUHQRORQJWHUPVWXGLHV\HW RIVRPHRIWKHQHZHVWGUXJV7RJDWKHUIDFWEDVHGLQIRU PDWLRQ3ORWNLQUHFRPPHQGVWKH&//6RFLHW\DQRQSURƓW that focuses on education, support and research; The /HXNHPLD /\PSKRPD6RFLHW\DOHDGHULQWKHƓJKW DJDLQVWEORRGFDQFHUVDQG3DWLHQW3RZHUDQRQSURƓW devoted to supporting cancer patients and caregivers.

• Don’t give up your hobbies. Even if you have to cut back for a while, your passions can help you get through your treatments and buoy your spirits.

• Stay active. “Maybe some days you don’t feel good, but you can at least go for a walk, even if it’s a short walk,” he says. “Do something at a minimum. It will help you get back to living the way you did.”

• Listen to your doctor’s advice and instructions. 3ORWNLQQRWHVWKDWEDVNHWEDOOJUHDW.DUHHP$EGXO-DEEDU who has chronic myeloid leukemia, said it best in an interview: “Many people have the chance to beat this cancer, if you do it the right way and follow the instruc tions of your doctors—they’re seeing really good results with new drugs.” The same can be said for CLL.

Plotkin has been in remission now for nearly four years. Last October, plagued with infections, he started getting an infusion of intravenous immunoglobulin once a month to boost his immune system. He also goes in for blood work every four to six months.

e bene t of the treatment combination Plotkin had been on was estimated to last two to ve years, Choi told him. “It’s likely I’ll make it four and a half years, so the drug is doing better than they expected,” Plotkin says.

Earlier in the year, Choi told him that in the worst-case scenario, he’d have to start treatment again as soon as in nine to 12 months “and, if I didn’t misunderstand him, he also thought I’d only have to go on medicine [that one additional round] before I hit the 10-year mark.”

inking about the next round of treatment, Plotkin says, “I’m getting a little worried, but I probably shouldn’t be because I’m gonna have to go through it again.

“It’s the unknown, really. at’s what it is. You can’t predict what’s gonna happen. But I’m not gonna die tomorrow. is summer, I’m gonna see my kids and play some golf tournaments. I have time.” Q

THE PEOPLE WHO POWER

CLINICAL TRIALS

BY

THE CANCER HEALTH STAFF

CLINICAL TRIALS PLAY A VITAL ROLE IN MANY

aspects of our ght against cancer. Not only do they help test cutting-edge treatments that could be more e ective and better tolerated, but they also help experts develop new methods of prevention, screening, diagnosis and care. Trials can even lead to improved communication models, medical devices and much more.

Clinical trials can also give participants access to experimental therapies. Regardless of a trial’s outcome, the research contributes to the knowledge necessary to extend lifespan, enhance quality of life and, yes, cure cancer.

“Cancer clinical research is a true partnership between those with cancer and those who study and treat cancer,” notes Joseph Unger, PhD, MS, a health services researcher and biostatistician at the Fred Hutchinson Cancer Center. Unger led a recent study assessing research participation that found that one in ve people with cancer took part in some form of clinical research and that their enrollment in cancer treatment trials was notably higher (7.1%) than earlier estimates (2% to 3%).

For our fth annual Cancer Health 25 feature, we want to spotlight the power and the promise of clinical trials. To be clear, this is not a list of the most important clinical trials. Rather it highlights the talent, brains and bravery that come

together in the wide-ranging, complex world of these studies. Similarly, we are not ranking “the best” or creating a de nitive list, which would be impossible; instead, we’re spotlighting some of the amazing accomplishments taking place every day.

If you’re seeking information about speci c clinical trials, visit ClinicalTrials.gov or myTRIAList.org—which you’ll read about in the following pages. You can also inquire about trials through organizations specializing in your type of cancer; many o er online databases and have informed sta members you can contact.

As you read our 2024 Cancer Health 25 list, you will, of course, meet several scientists and principal investigators. To shake it up, in a few of the entries we also include co-leaders and teams, illustrating that this work isn’t accomplished solo. You’ll also be introduced to academic researchers, educators, advocates for the underserved, statisticians, lawyers, oncology nurses, patient navigators, a national politician and—last but never least—people living with cancer who participate in clinical trials.

It is an honor to amplify these individuals and their accomplishments. We’re sure you’ll be inspired.

Vinod P. Balachandran

New York, New York

Kelly Bolton

St. Louis, Missouri

Garnet Anderson, Ruth Etzioni, Ziding Feng, Katherine Guthrie, Charles Kooperberg and Scott Ramsey

Seattle, Washington

Earlier this year, the National Cancer Institute, part of the National Institutes of Health (NIH), launched the Cancer Screening Research Network (CSRN), a clinical trials network that tests new technologies for detecting cancer and determines how best to use them. For example: Trials could evaluate the bene ts and harms of blood tests that can screen for multiple cancers; though several such tests are already available, the Food and Drug Administration (FDA) has not yet authorized any. In fact, the CSRN’s pilot research project— the Vanguard Study—will help determine what a full-scale trial of these blood tests might entail, including recruitment, guidelines and follow-up of positive tests. e clinical trials network supports the Biden-Harris administration’s Cancer Moonshot, an initiative to boost research, cut the cancer death rate in half and, as Biden put it, “end cancer as we know it.” CSRN research is based out of eight different sites, with the Fred Hutchinson Cancer Center in Seattle serving as a coordinating hub. Helming the e orts there are Garnet Anderson, PhD; Ruth Etzioni, PhD; and Scott Ramsey, MD, PhD. ey are joined by statistical and data management team leaders: Ziding Feng, PhD; Katherine Guthrie, PhD; and Charles Kooperberg, PhD.

A surgeon scientist at Memorial Sloan Kettering Cancer Center, Vinod P. Balachandran, MD, leads a team conducting pioneering work that has the potential to transform the treatment of pancreatic cancer and provide proof of the therapeutic value of future cancer vaccines. Early results from his research showed that personalized mRNA vaccines could trigger an e ective and lasting immune response to pancreatic cancer and prevent some patients from relapsing. Customized vaccines are also being studied for other types of cancer, including colorectal cancer and melanoma.

Marisa Bittoni

Columbus, Ohio

To help prevent blood cancers, Kelly Bolton, MD, PhD, an oncologist and epidemiologist at the University of Washington Medical School, is leading clinical trials for people who have genetic mutations in the stem cells that give rise to low blood counts. ese individuals are at very high risk of developing blood cancers years or even decades later. In the trial, they’re treated with targeted therapies speci c to their mutations. e trials, which receive support from the Damon Runyon Cancer Research Foundation, are decentralized, with medications shipped to local doctors, which lowers the costs for patients and reduces the need for expensive travel. As new targeted therapies are developed, opportunities to prevent more blood cancers may arise.

A research assistant professor at Ohio State University Comprehensive Cancer Center, Marisa A. Bittoni, PhD, MS, studies the e ects of lifestyle risk factors—including diet, exercise and smoking—on lung cancer prevention and survival. She’s interested in the e ects of inammatory biomarkers, such as CRP and IL-6, on lung cancer risk as well as the interrelationships with the microbiome—the bacteria, fungi and other microbes that naturally live in the body. Her BEFIT study is exploring whether exercise programs may lower the risk of developing lung cancer by reducing in ammation and changing the microbiome. is research earned her a Lung Cancer Discovery Award from the American Lung Association.

Renee Botello

Beaverton, Oregon

As a treatment and clinical trial navigator for the LungMATCH team at GO2 for Lung Cancer, Renee Botello, MSc, o ers on-demand concierge-style service customized to meet each patient or caregiver’s needs. She also clari es any options or questions regarding next steps in treatment, including biomarker test results and appropriate clinical trials. She’s also responsible for Nuestra Gente, a health education initiative at GO2 that provides culturally relevant information about lung cancer for Latino communities in the United States. “As a native Spanish speaker,” she says, “I

am proud to expand Spanish support for lung cancer patients. ese materials will be a step toward improving equitable access to care for Hispanic/ Latinx patients.”

Priscilla K. Brastianos Boston, Massachusetts

As director of the Central Nervous System

Metastasis Center at Massachusetts General Hospital, Priscilla K. Brastianos, MD, leads research exploring the changes in DNA sequences that drive brain tumors. Scienti c ndings from clinical trials she conducted show that targeted therapy drugs may provide e ective alternatives to high-risk surgery and radiation therapy as a treatment for craniopharyngiomas—rare, recurrent brain tumors. She is also investigating innovative precision medicine approaches that are showing promising results in patients with meningiomas and metastatic brain tumors.

Keith Crawford Quincy, Massachusetts

a former researcher at Brigham and Women’s Hospital, Crawford recently teamed up with Memorial Sloan Kettering Cancer Center to present an educational webinar about how to make clinical trials work for Black men with prostate cancer.

Anthony El-Khoueiry and

Chanita Hughes-Halbert Los Angeles, California

Black men develop and die of prostate cancer at a higher rate than white men. e Prostate Health Education Network (PHEN) aims to eliminate this disease in Black communities, and its PHENTrials initiative works to increase awareness of and participation in research. Spearheading that e ort is Keith Crawford, MD, PhD, the director of clinical trials and patient education at PHEN. A graduate of Harvard University (he studied immunology, genomics and more) and

To engage underserved and minority populations in Phase I and II clinical trials, the national nonpro t Stand Up To Cancer (SU2C) launched the Diversity in Early Development Clinical Trials Research Grants Program last year. e program supports teams in Chicago, Dallas, Los Angeles and Philadelphia tasked with the goal of helping minority groups access clinical trials. Heading e orts in Los Angeles are Anthony El-Khoueiry, MD, an associate professor of clinical medicine who specializes in gastrointestinal malignancies and liver cancer, and Chanita Hughes-Halbert, PhD, an associate director for cancer equity who focuses on reducing disparities, including those linked to racial, genetic, socioeconomic and environmental factors. Based at the University of Southern California’s Keck School of Medicine, the research team will examine existing structures to identify areas that can be improved.

Toni English

Rockledge, Florida

After experiencing frequent nosebleeds, Toni English was diagnosed

with a rare form of cancer—mucosal melanoma in her nostril— and given six months to live. at was in 2015. Despite surgery and treatments, the cancer spread to her brain, lungs and right kidney. en English joined a clinical trial testing tumor-in ltrating lymphocyte (TIL) therapy. Not only did it work for her, but the trial also led the FDA to approve the rst TIL therapy earlier this year (turn to page 7 to learn more about this novel treatment). Today, English educates and supports others through Facebook and the Mucosal Melanoma Warriors Foundation. “Ever since my time as a trial participant,” she recently told the Melanoma Research Alliance, “I have become an advocate for more awareness around clinical trials for rare cancers.”

Ricki Fairley Annapolis, Maryland

After surviving metastatic triple-negative breast cancer, Ricki Fairley cofounded Touch, e Black Breast Cancer Alliance, of which she is also the CEO. Touch educates and advocates via such events and programs as When We Tri(al) and the weekly web series e Doctor Is In. To mobilize the Black community to participate in clinical trials, she helped launch #BlackDataMattters (#BDM), an initiative that operates in partnership with Morehouse School of Medicine, Ciitizen and others. Treatments haven’t been extensively tested in Black women, notes TouchBBCA.org, which explains that “until we have more Black women

included in research, we cannot put an end to the disparities that Black women diagnosed with breast cancer face.”

Kerri Gober

Atlanta, Georgia

As associate chief of sta for the discovery and research department at American Cancer Society (ACS), Kerri Gober connects teams and ensures awless execution of key initiatives to advance ACS’s mission. Her guidance for research e orts includes several programs focused on health equity and diversity, such as those boosting enrollment of Black men in prostate cancer clinical trials and increasing the pipeline of diverse oncology researchers. She’s an ambassador for VOICES of Black Women, an initiative to engage 100,000 Black women in a longitudinal study focused on cancer risk and outcomes. A erce community advocate, Gober is also involved with several groups focused on health, educational and economic equity.

Amanda Goodstadt

Chicago, Illinois

can take skill and e ort—for example, getting hospitals to accept out-of-state Medicaid payment is a common issue. As senior sta attorney for the nonprofit Triage Cancer (TriageCancer.org), Goodstadt supports education and provides free one-on-one assistance.

Lisa Hefner and Christine Verini

New York, New York

Attorney Amanda Goodstadt knows cancer. Her husband is a lymphoma survivor, her mother is undergoing treatment for breast cancer and she lost a close friend to leukemia six years ago. She also knows that many people need help navigating the legal and nancial consequences of a diagnosis and, especially, a clinical trial. While hospitals that sponsor clinical trials cover trial-related care, getting insurance coverage for other routine costs

Robin Kelly

Are you searching for a cancer clinical trial to join, or maybe you’d like to hear from former participants? en check out myTRIAList.org as well as its videos and social media accounts. Launched in October 2023, the initiative helps patients nd trials based on location, among other criteria, and o ers rst-person accounts, doctor interviews, tutorials and more. is vital resource arrives via a partnership spearheaded by Lisa Hefner, group president of Brightly Network Companies (including Blend. Works), and Christine Verini, CEO of CancerCare, a national nonpro t that provides numerous services to people a ected by cancer. “We’re really excited about this initiative,” Verini says. “We are passionate about helping people be a part of clinical trials.”

Matteson, Illinois Congressmembers have a role to play in the success of clinical trials. Not only do lawmakers secure funding needed for research, but they can also pass laws ensuring that all

Americans can participate in and bene t from medical innovations. One example: In 2022, U.S. Congresswoman Robin Kelly (D–Ill.), chair of the Congressional Black Caucus Health Braintrust, introduced the NIH Clinical Trial Diversity Act to make sure underrepresented communities are included in federal trials. Numerous lawmakers support the legislation. Similar bills include the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Act, the Diverse and Equitable Participation in Clinical Trials (DEPICT) Act and the Childhood Cancer Clinical Trials Act.

Salvatore La Rosa

New York, New York

As chief scienti c o cer of the Kidney Cancer Association, Salvatore La Rosa, PhD, brings the voices of cancer patients to every point along the clinical trial pathway—from planning through post-trial feedback—to improve the lives of people with kidney cancer. La Rosa, former chief scienti c o cer at the Children’s Tumor Foundation, is a medicinal chemist with a background in biotech drug discovery and nonpro t leadership. Patient-centered research is especially critical in kidney cancer, which is tough to spot, di cult to treat and includes many rare types that often go undiagnosed. La Rosa also collaborated with investigators to have patient panels provide input on a kidney cancer qualityof-life assessment questionnaire, currently in a clinical trial.

Kelly Laschinger and Leah Szumita

Rye Brook, New York

e Leukemia & Lymphoma Society launched the Clinical Trial Support Center in 2016, with one parttime nurse. Now, director Leah Szumita, MS, RN, and manager Kelly Laschinger, MSN, RN, oversee 12 nurse navigators with expertise in pediatric and adult blood cancers who provide free one-on-one navigation support in English or Spanish. Navigators identify potential clinical trials, answer questions, help overcome barriers to enrollment and provide logistical support. e program is a national model for e orts to increase enrollment in clinical trials, including for underserved populations, at every stage of treatment. In the past ve years alone, the center has helped nearly 5,000 blood cancer patients navigate clinical trials.

Kristen Legor

Boston, Massachusetts

of clinical research nursing operations and associate chief nurse at the Dana-Farber Cancer Institute, Kristen Legor, PhD, RN, JD, is revolutionizing clinical trial nursing roles and processes. While guaranteeing the care and safety of her team’s oncology patients and the integrity of the research protocol, Legor guides and trains sta to advance the lifesaving potential of clinical trials.

Jessica McDermott Aurora, Colorado

may aim to collect vital data to establish best protocols and screening methods. One example: the IGNITE-TX study, led by Jose Alejandro Rauh-Hain, MD, MPH, a gynecologic oncologist at the University of Texas MD Anderson Cancer Center who’s originally from Mexico City. e study’s goal is to explore ways to increase genetic testing of family members at higher risk for Lynch syndrome (which is associated with colorectal, kidney, pancreatic and stomach cancers) and people with a family history of melanoma, breast, ovarian, prostate and pancreatic cancers (associated with BRCA mutations). Interested participants can enroll online for free and contribute to the growing knowledge base on inherited cancer syndromes and how to prevent and detect them.

Paul Shay

New York, New York

Successful clinical trials and related breakthroughs would not be possible without the essential work of clinical research nurses. ese specialized nurses not only ensure quality patient experiences but also organize and execute countless elements of a trial, including protocol reviews and patient education. What’s more, they work with interdisciplinary colleagues to ensure equal access to clinical trials for all populations of cancer patients. As the vice president

Jessica McDermott, MD, MSCS, is the lead investigator conducting clinical trials at the University of Colorado (CU) Cancer Center and the Rocky Mountain Regional Veterans A airs Medical Center as well as CU Cancer Center’s deputy associate director for diversity and inclusion in clinical research. Her work addresses obstacles that hinder equitable access to clinical trials and helps eliminate barriers to patient retention in such studies. “As a group, we believe all patients should be given the opportunity to participate in clinical trials,” McDermott says. “Trials can give patients access to cutting-edge treatments or hope when they no longer have standard options.”

Jose Alejandro Rauh-Hain

Houston, Texas

In the popular imagination, clinical trials involve lifesaving experimental drugs and high-stakes procedures. Reality isn’t always so dramatic. Some cancer trials, for instance,

To properly understand whether the results of clinical trials can apply to a wide swath of people with cancer, trials must enroll diverse populations, not just in terms of gender, race, ethnicity and socioeconomic background but also sexual orientation and identity. While leading the PRIDE Alliance People and Business Resource Group at Bristol Myers Squibb (BMS), Paul Shay was a key player in its decision, announced last year, to include LGBTQ data in all of the company’s U.S. clinical trials—making BMS the rst pharma to do so.

anks to Shay, a biopharma executive with strategy and operations experience, BMS also sponsored the National LGBT Cancer Network’s groundbreaking Out Cancer Survey.

Sara Tolaney

Boston, Massachusetts

As a breast cancer researcher, Sara Tolaney, MD, MPH, the chief of the division of breast oncology at the Dana-Farber Cancer Institute, focuses on developing novel drugs that are less toxic and more e ective. Her work includes several cutting-edge therapies—notably a regimen for early stage HER2-positive breast cancer patients—and her contributions to breast cancer research recently earned her the Susan G. Komen Rising Star Researcher Award. Tolaney is also an associate professor of medicine at Harvard Medical School. “It’s an incredible journey,” she told The ASCO Post, “taking a drug from first-in-human studies into the pipeline all the way through registration.”

Daniel R. Wahl

responsible for resistance to treatment. His research, which receives funding from the Damon Runyon Cancer Research Foundation, shows that inhibiting abnormal metabolism in glioblastomas might help more people with these cancers live longer. “Our standard approaches to improve survival for patients with glioblastomas have been unsuccessful,” he says. “My research team tries to develop new, creative approaches to help patients with this tough disease.”

Dann Wonser

Portland, Oregon

Ann Arbor, Michigan

A physician scientist and a clinical investigator at the University of Michigan, Daniel R. Wahl, MD, MPH, focuses on creating new treatments for glioblastomas—aggressive, recurring brain tumors that frequently result in poor patient outcomes. He’s developing clinical trials to merge standard therapies for glioblastomas with drugs that target the metabolic pathways

Dann Wonser, who credits clinical trials with saving his life, shares his self-education in a blog, which is published on Cancer Health, and in his book, Second Wind: riving With Cancer. When his Stage III lung cancer, diagnosed and treated in 2006, recurred as Stage IV metastatic cancer in 2011, he was treated with multiple therapies. But when the treatments stopped working in 2014, a clinical trial gave him access to a next-generation targeted therapy, which he stayed on until 2021; he has since been on three more. A patient advocate who lobbies Congress to cover more clinical trial expenses, Wonser empowers people with cancer to access cutting-edge treatments available only in clinical trials.

Timothy Yap

Houston, Texas

Finding e ective cancer drugs with fewer side e ects starts with the rst time an agent is tested in humans:

Phase I clinical trials, which measure side e ects, dose and antitumor activity. Timothy Yap, FRCP, PhD, head of clinical development in the erapeutics Discovery division at MD Anderson Cancer Center, is working to design these early trials better. While the traditional chemotherapy model emphasizes the highest tolerable dose, targeted therapies often work e ectively at lowerthan-maximum doses. Yap is developing new drugs that can treat many cancers, often in combination, by targeting DNA damage in people with BRCA and related mutations. He is also exploring biomarkers that could predict which patients will bene t from new therapies.

Heather Yeo

New York, New York

Close monitoring of people with colorectal cancer after surgery can reduce complications that can land them back in the hospital. To make that happen, Heather Yeo, MD, a surgical oncologist at NewYorkPresbyterian/Weill Cornell Medical Center, is empowering patients with a smartphone app, mHeals. Now in clinical trials, the app tracks mobility and pain, provides self-care support and allows patients to upload images of their incisions and to report any issues to get help quickly. Such patientdriven apps have the potential to transform patient care. Yeo also conducts research on the promise of immunotherapy to reduce the need for colorectal cancer surgery and is working to increase the representation of women and people of color in the surgical eld. Q

Lessons and Blessings

Bishop Stacey S. Latimer, who has metastatic prostate cancer and HIV, finds healing power in clinical trials, spiritual journeys, his faith community and a large four-legged friend.

WHEN BISHOP STACEY S. LATIMER LEARNED

he had prostate cancer in 2019, the disease had DOUHDG\DGYDQFHGWR6WDJH,97KLVZDVQōWKLVƓUVW

time facing a life-threatening illness. While serving in the military, he was diagnosed with HIV. That was in 1987, almost a decade before highly effective treatment became available.

Although relatively healthy, Latimer was placed in the AIDS ward at Walter Reed National Military Medical Center in Washington, DC, where he was asked to help attend to people dying of AIDS. He witnessed profound loss and stigma; indeed, some parents were unwilling to visit their dying children. “It tore me up,” he recalls. “I made a pact with God, that if you let me live, this is what I’ll do, I’ll [work to] make a difference with HIV.” In the ensuing years, Latimer built a career ministering to the disenfranchised, including folks with HIV, and doing outreach, capacity building and education in the Black church.

Along the way, he came to terms with being gay, and his understanding of theology deepened.

Stacey S. Latimer has moved from faith to faith.

Latimer went from being a Baptist to an indepenGHQW3HQWHFRVWDOWRDPHPEHURIWKHJD\DIƓUPLQJ Unity Fellowship Church in Brooklyn. He was the founder and pastor of Love Alive International Sanctuary of Praise Worship Center. That led to liberation theology and becoming a bishop with the Church of the Everlasting Kingdom. “As scripture says, we move from faith to faith and glory to glory,” Latimer says of his evolution.

He was leading a congregation in Manhattan when, in 2019, he learned he had metastatic prostate cancer. Chemotherapy helped for over two years—shrinking 11 tumors down to four before it stopped working. Latimer’s treatment options were complicated by a low white blood cell count, but his doctors found a clinical trial at New York University involving a targeted therapy that releases radiation to kill cancer cells.

When Cancer Health spoke with Latimer via Zoom, he had just completed a round of infusions in a cycle that will last 26 weeks. We initially had to push back our discussion because he was feeling “one of those nauseous mornings.” Our discussion has been edited for length and clarity.

Thanks for rallying for this interview. I’m surprised your dog, Kane, isn’t joining us. I have to stay three feet away from him for three days—and from pregnant women and children for seven days. After I get my injection, I’m radioactive. I don’t think he understands, and it’s like he’s becoming depressed. He’s been with me every day—except one day I was in the hospital. I picked him up in 2020 when he was 10 weeks old. He’s an Italian mastiff, a gentle giant. He draws a lot of attention and is known as the Mayor of Brooklyn.

How did you two end up together?

As a child, I always had dogs. When in my teens, I saw an Italian mastiff, and I was like, I want that dog. But they were too expensive. Then [a few years ago] I was on the internet one day, and one popped up on my Facebook feed, and I became obsessed. So I started looking around at breeders. I put a deposit down, and then two months later, the cancer diagnosis came. I didn’t know what to do. I didn’t want to have him orphaned. I decided to discuss it with my doctor. He said, “Mr. Latimer, you get your dog. People with pets generally do better.”

Has Kane boosted your health?

GETTING A DOG JUST STARTS TO MAKE YOU FEEL GOOD.

He has been a life changer. Actually, before I got him, the doctor said to me one day, “Mr. Latimer, I want you to do at least 7,000 steps a day.” It was a struggle. But once I got him—10,000 steps, 15,000 steps. Getting a dog just starts to make you feel good.

You have been open about HIV and sexuality in the church community. Do you also share about your cancer?

I had started pastoring here in about 2009 and was heading to become a bishop. They knew I was having [health] issues. When my urologist told me, “I think this is cancer,” I told my staff, and they said, “You aren’t doing this by yourself.” When I went to the doctor, four staff members went with me! They came with pens and paper and drilled the doctor. At the end, he asked if I had any other questions. I said there was only one thing they didn’t ask: “How long do I have to live?” He said, “Mr. Latimer, let’s say this, you’re not going to die in the next two weeks. But I want you to know this is serious.”

[During a follow-up visit] he showed me images of the 11 tumors I had, and he said, “I want to do something that most folks haven’t heard of. I’m

Latimer with Kane, an Italian mastiff, in Brooklyn

going to put you in remission.” What he was doing was giving me hope.

:KHQ,ƓUVWJRWP\FDQFHU diagnosis, I went back to life as usual. The doctors were surprised and said I have to stop some of it. My bishop called me and said, “We all love you, but you are not Superman. I want you to rest and heal. Practice your stillness. Practice your mindfulness.” And once he told me that, I did.

Can you share how faith impacts your outlook and your health?

For me, religion has always given me hope. Faith always provided that God is going to make a way. If you believe you are divinely made by God in God’s image for a divine purpose, it does something to you and for you. All of that says, “You’ve got something to do. There’s a mission.” All of that says, “I have no time to sit around and die, nor LVGRLQJWKDWJRLQJWRIXOƓOOPHRUP\SXUSRVHŐ I think of how my life has been used to educate the Black church about HIV and AIDS and now cancer. I feel this need to herald and scream because doctors are not telling us about the things we have to stay on top of [like cancer screenings].

Finally, can you share a motto or religious teaching that has inspired or comforted you along your health journeys?

0\SKLORVRSK\VWDUWLQJLQWKHƓUVWWLPH, was told that my particular cancer treatment was no longer working, has been: “I refuse to worry about and fear that which has not happened, for it will rob me of the joys of today.” And a motto that we share in Kingdom is: “Life has only lessons and blessings to offer, if we are open and receptive to believe.” Q

Get Attuned to Music Therapy

An interview with Karen Popkin, a board-certified music therapist and a licensed creative arts therapist at Memorial Sloan Kettering Cancer Center in New York City

What is music therapy for cancer patients?

It’s an interpersonal approach where we use different types of musical experiences to create a space for coming together. The cancer patient has an opportuQLW\WRXVHPXVLFWREHQHƓWWKHLU mental health and their physical health. We can focus on relaxation and also explore meaning and promote communication.

gateway to being able to communicate more about how we feel and what is important to us. Then we can move into more active experiences of playing different instruments, becoming familiar with learning to play something and maybe getting into improvisation and songwriting.

found that many cancer survivors are at a point in their life where their sense of identity has undergone some changes. The creative work that we can do together really helps people to solidify where they want to go next with their life.

Do patients need experience with music to do this therapy? No. We welcome people at all experience levels to try music therapy, and it’s the job of the therapist to guide an experience that’s appropriate for each person. We don’t focus on performance; rather, we focus on the process of experiencing something together.

:KDWEHQHƓWVGR\RXVHHIRU your cancer patients?

Music therapist

Karen Popkin with a patient

Can you tell us more about the types of activities that can be part of music therapy? We may start with something that allows a person to simply relax into the experience. It may be music-based meditation, for example. Or we may employ shared listening experiences, like listening to music together and discussing its meaning and VLJQLƓFDQFH6RPHWLPHVWKH music that we most love and that resonates with us can be a

We’ve done a lot of work around helping people manage and cope with anxiety or depressed mood. We’ve done some work at the bedside—when people are feeling especially sick or vulnerable— helping to transform the hospital environment by welcoming in friends and family to join a session. In a study that we’ve been conducting, we’ve been focused primarily on anxiety, but along with that, we have

Do you see patients on all stages of the cancer journey? Yes. We’re currently piloting individual music therapy in our outpatient center, and so we have some people who are in the survivorship phase who have been coming in.

+RZFDQSDWLHQWVƓQGD music therapist near them? The American Music Therapy Association website has a section called “How to Find a Music Therapist.” Another way may be to check with a hospital or university in the area that provides training for music therapists.

$QGƓQDOO\ZKDWLQVSLUHV you in your work?

It’s really the opportunity to spend time with people who are so ready to move into their next phase of life. The work can be very joyful at times. It’s a privilege that people put their trust in me when we are working together. I love the fact that no two days are the same and there’s unlimited beauty and creativity in the work. Q

Who’s on your team? cancerhealth.com/team

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&$1&(5,67+(/($',1*&$86(2)0257$/,7<$021*86/$7,126 accounting for about 20% of deaths, according to an American Cancer Society report. What’s more, while Latinos are less likely than their white counterparts to be diagnosed with the most common cancers (lung, colorectal, breast and prostate), they face higher risks for cancers linked to infections (liver, stomach and cervix). For Latinos, common barriers to cancer care include cultural misconceptions about the disease and a lack of prevention awareness. The following resources are tailored to Latinos and Spanish speakers.

$ƦƞƫƢƜƚƧ&ƚƧƜƞƫ6ƨƜƢƞƭƲ cancer.org

Spanish speakers can access detailed cancer information at 800-227-2345 and online at cancer.org/es. In addition, the group’s National Colorectal Cancer Roundtable (nccrt.org) promotes screening for the second-most common cancer among Latino men. Its online resource center includes a Latinos and Colorectal Cancer Companion Guide, which covers top barriers to screening and more.

$ƦƞƫƢƜƚƧ/ƮƧƠ$ƬƬƨƜƢƚƭƢƨƧ lung.org

Last year, about 11,800 Latinos were diagnosed with lung cancer. American Lung Association offers Spanish and English resources on prevention—including tool kits to help people quit smoking—with the aim of lowering lung cancer incidence. Other resources include educational pages on vaping among teens, lung cancer screening and more.

&ƚƧƜƞƫ &ƚƫƞ cancercare.org

Cancer Care staff provide free support services, counseling, information, workshops, patient

Discover more resources: cancerhealth.com/resources

navigation and more in Spanish to help folks navigate cancer.

)ƚƦƢƥƲ5ƞƚƜơ familyreach.org

Racial wealth disparities often JLYHULVHWRƓQDQFLDOEDUULHUVWKDW impede access to cancer care. Family Reach provides nonmediFDOƓQDQFLDOVXSSRUWIRUSDWLHQWV IDFLQJFDQFHUDQGRIIHUVLWVƓQDQcial tip sheets in Spanish. Family Reach’s Cancer Equity Initiative focuses its efforts on the regions with the highest rates of cancer mortality and poverty among Latinos and African Americans.

+ƢƬƩƚƧƢƜ$ƜƜƞƬƬ)ƨƮƧƝƚƭƢƨƧ hispanicaccess.org

This group works to improve health outcomes for U.S. Latinos. Its multistate initiative, Together We Can Defeat Cancer (Juntos Podemos Contra El Cáncer), helps change Latino attitudes toward cancer care. The project connects Latinos with bilingual cancer services and boosts awareness of preventive care.

/ƚƭƢƧƨ&ƚƧƜƞƫ,ƧƬƭƢƭƮƭƞ/&, latinocancerinstitute.org

7KHQRQSURƓWQHWZRUN/&, provides education and support

services to Latinos with cancer and their caregivers. To ease the burden of cancer, LCI acts as a connector and advocate for Latinos. Its website offers the latest on global cancer research and policy addressing inequities impacting Latinos with cancer.

/ƚƭƢƧƚ6ƢƬƭƞƫƬ6ƮƩƩƨƫƭ/66 latinasisterssupport.org

Latinas born in the United States experience a higher incidence of breast cancer compared with their counterparts born in Latin America. LSS supports New York–based Latinas living with all types of cancer by raising community awareness, promoting education and providing resources to expand access to cancer diagnosis and care.

/ƞƮƤƞƦƢƚŻ/ƲƦƩơƨƦƚ

lls.org

The LLS Family Support Groups program gives patients and their families a place to share information in a comfortable environment. LLS staffers include Latino patient and community outreach leaders who offer culturally relevant community workshops, educational events and more.

Getting a Good Night’s Sleep

Cancer treatment can negatively affect your quality of sleep. But you can take effective steps to ensure you get the critical rest you need.

MANY PEOPLE LIVING WITH CANCER EXPERIENCE DIFFICULTY SLEEPING. SIDE

EFFECTS FROM medications and other therapies can hinder quality shut-eye, as can anxiety, depression, worry, fear, stress and pain or physical discomfort, leading to fatigue, insomnia and an overall poorer quality of life. In addition, your environment and habits can ratchet up the risk for sleep problems. Such issues may occur temporarily or persist for several months or years following cancer treatment. Over-the-counter and prescription medications may help; however, there’s plenty you can do naturally to overcome these challenges and catch more zzz’s.

Step Into the Light

Sunshine helps to reset our circadian rhythm—the body’s natural sleep-wake cycle. What’s more, controlling when you get sunlight helps regulate that cycle; exposure later in the day translates to a later bedtime for your body. Sunlight also prompts the brain to secrete serotonin, a feelgood hormone that helps lift our mood.

Create a Sound Sleep Routine

Turn in for bed at the same time each night, and get up at the same time every morning. Aim to make your bedroom dark and quiet with a comfortable temperature. Before lying down, do something that relaxes you, but limit your time on screens. Electronic screens emit blue light, which disrupts sleep and blocks the body’s production of the hormone melatonin, which helps regulate sleep.

Stay Active Moving more and sitting less can be a good way to help you get the slumber you need. If your doctor says it’s safe for you to exercise, try some simple aerobic exercise to boost your heart rate and increase energy. For example, walk, dance, jog or swim accordLQJWR\RXUƓWness level. If you must nap during the day, limit your snooze time to less than an hour.

Mind

What You Eat and Drink

Avoid eating large meals and drinking caffeine or alcohol before bedtime, which can ruin your sleep. Also, try a glass of warm milk—unless you’re lactose intolerant, allergic to dairy or suffer from irritable bowel syndrome. Turns out this home remedy is supportHGE\VFLHQWLƓF evidence: The amino acid tryptophan found in milk can induce sleep, mainly by helping the body synthesize serotonin and melatonin.

Talk With Your Doctor

Share your experiences with your health care team. Keep track of the medicines you take, when you go to bed, how long it takes to fall asleep and your naps and activities during the day; plus, list what you eat and drink. This detailed information can help doctors evaluate your sleep problems and develop an effective strategy to improve them.

A PEACEFUL SUMMER

Embrace meditative outlets with an affirmation-filled adult coloring book, luxury journal, comforting chemo care package and more.

,WFDQEHGLIƓFXOWWR articulate your love and support to someone diagnosed with cancer. The unique Love Heals Journal ($65) is an interactive 160-page journal/kit featuring sections you’ll personalize before sending WR\RXUORYHGRQH,WōVƓOOHGZLWK guided prompts, inspirational quotes, an embroidered bookmark, 90 blank pages, a sticker sheet and more, but the personal touches will ensure the recipient never feels alone.

Did you know that many people with cancer become sensitive to smell before, during and after treatment? Just Don’t Send Flowers specializes in thoughtful alternative gifts for folks undergoing cancer treatment. The Big Queasy Cancer Care Package ($135) features a dozen comforting items, including soap and bath treatment for dry skin, a soft ŴHHFHEODQNHWSX]]OHERRNQHFN pillow and more. Most gift bundles offer items you can customize to match the style of your loved one, including the Chemo and Radiation Gift Combo ($110)

For nearly 20 years, Hats for Healing created stylish, protective headwear and accessories in vibrant colors and styles. Made of 100% lightweight organic cotton, its full-coverage chemo hats soothe irritable scalps and shield the wearer from the sun all summer long. The Reversible Wide Brim Sun Hat ($52) provides UPF 50 protection in 15 unique designs. The smaller Sun Hat ($52) offers equal protection with a stretch cotton jersey band that moves with you, making it perfect for outdoor activities.

It’s summertime, so why not enjoy a cancer-themed beach read billed as “a weirdly funny book about mortality”? A breast cancer diagnosis inspired Lori Jakiela’s fourth published memoir, They Write Your Name on a Grain of Rice (paperback, $17), in ZKLFKVKHUHŴHFWVRQKRZKHUFDQFHUMRXUQH\ upended her personal life. The essays in this stream-of-consciousness book are punctuated by Jakiela’s existential musings and span topics such as family, genetics and the Rust Belt and will likely bring to mind the sorts of conversations you’ve had with longtime friends.

Many adults living with cancer turn to coloring to pass time during treatment. Coloring Through Cancer (paperback, $7.70) features 30 pages of powerful DIƓUPDWLRQVVHOHFWHGWRDOOHYLDWHDQ[LHW\DQGIHDU

Coloring is a meditative outlet that can reduce stress, boost one’s immune system and improve sleep, memory and overall well-being. Inspired by her mother, who found solace in coloring while undergoing breast cancer treatment, creator 6DUDK5HQDH&ODUNLQFOXGHVLQWKHERRNVXFKDIƓUPDWLRQVDV

“My courage is stronger than my fear.” Novice colorists can take tutorials, download coloring pages, watch YouTube videos and join virtual groups via SarahRenaeClark.com.

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

CLINICAL TRIALS

Joining a clinical trial can be a good way to access experimental treatments and to advance medical science. Cancer Health wants to know about your knowledge and experience with clinical trials.

Have you ever been diagnosed with cancer?

TYes TNo

Are you familiar with the concept of clinical trials for cancer treatment?

TYes TNo

'R\RXWKLQNWKHSRWHQWLDOEHQHƓWVRIFOLQLFDO trials outweigh the potential risks?

TYes TNo TIt depends on the trial.

Are you aware of any barriers that would prevent you from participating in a clinical trial?

TYes TNo

Are you aware that participants have the right to withdraw from a clinical trial at any time for any reason?

TYes TNo

Do you think it is important for clinical trials to include diverse participants?

TYes TNo

Has your health care team ever discussed the option of participating in a clinical trial?

TYes TNo

Have you ever participated in a clinical trial for cancer treatment?

TYes TNo (Skip next two questions.)

What type of treatment was studied in the clinical trial? (Check all that apply.)

TCAR-T therapy TImmunotherapy

TChemotherapy TRadiation therapy

THormone or TSurgery endocrine therapy TTargeted therapy

TOther ___________________________

What motivated you to participate in a clinical trial? (Check all that apply.)

TAccess to comprehensive care

TAccess to new treatment options

TDesire to advance scientific knowledge

TDesire to help people with cancer

TFinancial incentives

TOther ___________________________

What year were you born?

What is your gender?

TMale TFemale TTransgender TOther

What is your current level of education?

TSome high school THigh school graduate

TSome college TBachelor’s degree or higher

What is your annual income?

TLess than $15,000 T$15,000–$34,999

T$35,000–$49,999 T$50,000–$74,999

T$75,000–$99,999 T$100,000 or more

What is your ethnicity? (Check all that apply.)

TAmerican Indian/Alaska Native

TArab/Middle Eastern TAsian

TBlack/African American THispanic/Latino

T1DWLYH+DZDLLDQ3DFLƓF,VODQGHUTWhite

TOther ___________________________

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.

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