Ryan McDonald, Associate Editorial Director for 

®, has been with the team since February 2020 and has previously covered medical news across several specialties prior to joining MJH Life Sciences. He is a graduate of Temple University, where he studied journalism and minored in political science and history. He considers himself a craft beer snob and would like to open a brewery in the future. During his spare time, he can be found rooting for all major Philadelphia sports teams. Follow Ryan on Twitter @RMcDonald11 or email him at 

Ryan McDonald

Will it smell? Is the ocean or a hot tub off limits? What about cleaning the pouch?

 that Stephanie S. Yates, a nurse practitioner who specializes in wound care at Duke Cancer Center Wound Ostomy Clinic in Durham, North Carolina, said she has heard over the past 40 years.

® spoke with Yates to learn more about ostomies and educate patients with cancer on how to best care for themselves after receiving one.

The type of stoma a patient receives depends on the location of their tumor.

An ostomy is a surgical procedure that creates a new way for waste — mostly feces and sometimes urine — to leave a person’s body. Not to be confused with an ostomy, the stoma refers to the opening created during the ostomy procedure.

As Yates noted, the type of stoma a patient with cancer receives depends on the location of their tumor. For instance, most patients with tumors near the anus need a permanent colostomy. In this instance, an opening is made into the colon through the abdomen to allow fecal waste to bypass the part of the colon that was removed.

But, as Yates explained, fewer and fewer colostomies are being performed across the U.S. In fact, she said about 70% of the patients she sees have a temporary ileostomy, in which an opening is created in the small intestine through the abdomen. Surgery for these patients involves removing
a section of the colon with the intent of being able to reconnect it.

“They have to divert the stool with an ileostomy in the small intestine for a short amount of time to allow it to heal before the stool has to go that way and pass through the anus,” she said in an interview. “And that makes a big difference.”

On average, patients who receive a temporary stoma have it in place for three to six months and are then able to return to using the toilet in a normal way, according to Yates.

Yates encourages patients to ask their care team questions about their stoma, especially whether it will be temporary or permanent.

“It makes a difference mentally in how you accept things (as well as) adjusting to what this new lifestyle is going to be about,” she said.

But unfortunately, there are cases in which a concrete answer may not be available. Yates said this is because the tumor may be more aggressive than first believed, or certain types of treatment may prevent patients from undergoing additional surgery. Moreover, a patient may have hoped for reconnection in the future, but disease progression may take that option off the table.

One of the main concerns most patients have is whether they will smell, according to Yates.

“I’m usually able to easily inform them that they should not have smell because the pouches are made out of odor-proof material,” she said. “The only time you have smell (is when) you’re usually in your bathroom (caring for the pouch), but everybody else has smell (when in the bathroom).”

Additionally, she explained, people assume that they need to overhaul their diet.

“A lot of people think, oh, there’s a colostomy diet,” she said. “But there really is not.”

If certain foods caused someone to experience stomach upset or have gas, that will likely continue after an ostomy. Yates suggested that patients pay more attention to items that cause gas — such as beer or beans — and choose how much and when they consume those particular foods.

“Otherwise, there’s no absolute must eat or can’t eat,” she said. “We would encourage you to drink plenty of fluids and eat a variety of foods.”

But that advice changes slightly for patients who have received an ileostomy, according to Yates. She recommends that these patients maintain a low-fiber
diet as too much fiber may upset their system and make it so they’re unable to pass their stool as easily. In this case, patients are advised to eat cooked vegetables, meats, breads and pastas.

Washing with soap and water is one of the best ways to care for the area after an ostomy, according to Yates.

“If you think about it, (it’s) like (how) you take care of your bottom — clean and neat,” she said. “It doesn’t have to be sterile (and) it doesn’t have (to include) any particular harsh cleaners.”

Depending on a patient’s preference, they may remove the pouch around the stoma in the shower, dispose of it and then place a new adhesive and pouch over the stoma. Or they may feel more comfortable changing their pouch and cleaning the stoma area at the sink.

As for infections following a stoma, Yates noted that the risk drops significantly within a month of the procedure. The worst a person might experience is skin irritation around the stoma.

“That’s where the stool just sits against the skin typically and causes skin irritation,” she explained. “I think of that more like diaper rash. It’s a matter of using some products to just protect the skin better. Maybe adjusting the fit of the ostomy pouch system. And then that way, usually that skin irritation takes care of itself.”

And if people were worried about having to consistently clean the pouch that holds their feces, that’s not much of a thing anymore. Most pouches are disposable and insurance covers them, according to Yates.

Also, she added, the pouches and adhesive are designed so as to hold up well in water.

“You can go into the swimming pool, the hot tub, the lake, the creek, the ocean — whatever kind of water you want to be in,” she said.

For more news on cancer updates, research and education, don’t forget to 

Articles

As part of CURE®’s Heal at Home series, we offer a guide on ostomies following surgery and how patients can best care for their stomas.

Caring for an Ostomy

Biomarker testing helps guide cancer treatment decisions, but there’s no hiding that the field is complex and often difficult for patients to understand, according to an expert.

According to Dr. Christopher Lieu, co-director of gastrointestinal medical oncology at University of Colorado Cancer Center in Aurora, general discussions around biomarkers, genetics and proteins can overwhelm patients.

Lieu and Drs. John Marshall and Elizabeth Montgomery led a panel discussion as part of a gastrointestinal cancers webinar series held by 

® and in partnership with the GI Cancers Alliance to address patient questions and concerns about testing methods in gastrointestinal cancers.

One of the main ways patients can ease their concerns and ensure they’re not as overwhelmed, according to Lieu, is to ask their provider a set of questions.

He suggested that patients with gastrointestinal cancers ask if their tumor has been tested for biomarkers, and if it has not, patients should ask if it will be why it hasn’t been done.

Sometimes, Lieu explained, the testing may be considered unnecessary.

“The answer might honestly be as simple as, ‘You have stage 1 cancer. I could order the testing, but it’d be a gigantic waste of money because it won’t influence our decision,’” he said.

Lieu explained that it’s reasonable to ask how the results will affect their treatment. But if the provider says there are no actionable — or targetable — options, Lieu said patients should not become discouraged.

The benefit, he said, is that the testing has been done and that patients have the information gleaned from it. Lieu said several clinical trials and treatments may be on the horizon that could help those patients.

Or the results of the testing may inform providers enough to explain to patients that even though they may be on a certain treatment, there are other options if the drug stops working.

“That’s exciting,” he said. “That’s what we want to offer more (to) our patients.”

The panel discussed the possibility of needing repeat needle biopsies of tumors to detect cancer or potential spread of the disease.

For example, there may be an instance where a patient’s pathology report indicates there was no evidence of cancer but the biopsied area appears to be PET positive or “lit up on a scan.” 

A PET scan measures the metabolic activity of the cells in the body. In this instance, there may be evidence to suggest there’s abnormal tissue, but it’s not concrete enough to say it’s cancer.

Montgomery said the needle may have missed the tumor, and then a second biopsy would be needed to get a better sample of the tissue to determine whether the tumor is cancerous. Or there could be scar tissue or inflammation from past infections that causes the scan to light up, but in the end is insignificant.

“Sadly, if you’re in a position in which somebody thinks you could have cancer from a scan, and a tiny biopsy is done and no cancer is found, you really need to consider the possibility that the darned needle just didn’t quite get what it was supposed to get,” said Montgomery, a gastrointestinal and soft tissue pathologist at University of Miami Health System.

As part of CURE®’s four-part gastrointestinal cancers webinar series, a panel of experts recently answered questions and offered advice around different types of testing. 

Ask Questions to Avoid Confusion Around Tumor Testing

Two oncologists and three survivors turned patient advocates were honored last night during CURE®’s Multiple Myeloma Heroes® awards program.

In particular, CURE Media Group recognized Dr. Cesar Rodriguez Valdes and Tiffany Williams as inaugural recipients of the Multiple Myeloma Health Equity award; as well as Cynthia Chmielewski, J.P. Kealy and Dr. C. Anthony Blau as the Multiple Myeloma Heroes®.

Five individuals were honored at CURE®’s Multiple Myeloma Heroes® for their contributions to the myeloma space. 

From left: Dr. Cesar Rodriguez Valdes, Tiffany Williams, Cynthia Chmielewski, Dr. C. Anthony Blau, J.P. Kealy

These five individuals received their awards during an in-person celebration — which was also live-streamed to a virtual audience — hosted around the 64th American Society of Hematology Annual Meeting in New Orleans. Support for the 2022 Multiple Myeloma Heroes® award program was provided by Janssen.

“The people we’re honoring tonight with the Multiple Myeloma Heroes awards and the Multiple Myeloma Health Equity Hero awards have advocated for themselves and others in remarkable ways,” Tyrone Brewer, U.S. president of Janssen Oncology, said during the ceremony. “Each honoree delivers something unique in support of patients with multiple myeloma, carving new channels in advancing education, raising critical research funds, creating community connectivity, improving treatment access, addressing health equities and so much more.

“And as these individuals — and all of us here tonight — continue doing our part, someday, someday hopefully not far away, I believe we will find a cure for this rare blood cancer.”

Essays were submitted by colleagues, patients and family members that identified Rodriguez Valdes, Williams, Chmielewski, Kealy and Blau along with approximately two dozen other Multiple Myeloma Heroes® nominees.

During the awards program, actor, comedian and radio host D.L. Hughley moderated a panel discussion surrounding health equity in multiple myeloma.

Hughley was joined by Valarie Traynham, a patient advocate, and Dr. Joseph Mikhael, chief medical officer of International Myeloma Foundation and a professor in the Translational Genomics Research Institute at City of Hope Cancer Center in Duarte, California.

The trio addressed some of the challenges and disparities within the multiple myeloma space, and discussed ways all parties — including patients, advocates and oncologists — can improve health equity in this space.

Mikhael noted the significance of a discussion highlighting health care disparities during the event and addressed the challenges that the field faces in tackling what has inherently been built into society.

“What are the root causes that this has taken hundreds of years to build,” he said. “And we sadly build it from top down; from the essence of systemic racism; the way the health care system is built; to trust within that health care; for the insurance that individuals have; (all) those social determinants of health.

“When we talk about trying to get someone the right treatment, no one's going to come from chemo if they have an empty stomach. So making sure that we're caring for those very basic things,” Mikhael said. “And then indeed, at the level of myeloma (specifically), we can talk about awareness, we can talk about access, we can talk about the importance of engaging a community to overcome that. But unless we look at the big picture, and I think part of the problem now (is that) people want an instant solution, they want something that's going to change everything tomorrow. We want change, we want change right away, (but) we've got to look at the big picture and understand that this is built inherently within the society, we have to look at each of those steps.”

Traynham highlighted the significance of a lack of Black doctors in the space and why representation matters.

“When I went through this process, it was hard because there were no Black doctors,” she said. “And where I lived, there were plenty of myeloma specialists, but there were no Black doctors. So, I had to take it upon myself to learn as much as I possibly could and make the decision to go with the doctor that was available to me, although it wasn't a Black doctor, I did my research and picked the best one that I thought was going to suit my needs. And a lot of times we do have to do that, because there's just a shortage of African American doctors out here.”

Rodriguez Valdes was one of two individuals recognized for their work in breaking down systematic barriers and creating solutions to address health care disparities in the multiple myeloma community.

Rodriguez, who is the clinical director of multiple myeloma at Mount Sinai Hospital in New York, was nominated by his colleague, Donna Catamero.

In her nominating essay, Catamero explained in detail how Rodriguez exemplifies the perfect role model who champions for awareness of health care disparities.

She noted that his foray into advocacy started in the early 2010s when he began arguing for an oral-parity law in North Carolina. Catamero wrote that Rodriguez started advocating for the law after witnessing the inequalities surrounding minority and low-income patient access to oral chemotherapy.

As a faculty member of the Maya Angelou Center for Health Equity in Winston-Salem, North Carolina, Rodriguez promoted grants to provide financial aid for minority and underrepresented patients who would otherwise not be able to participate in clinical trials without the necessary funds. He also partnered with nonprofit organizations, such as the Leukemia & Lymphoma Society, to provide educational talks to Spanish-speaking patients on the importance of joining clinical trials.

This effort, according to Catamero’s essay, increased the number of minorities enrolled in clinical trials at Wake Forest Baptist — Comprehensive Cancer Center in Winston-Salem.

Most recently, Rodriguez joined Mount Sinai Hospital in 2021. Catamero explained that Rodriguez reviewed the demographics of the five boroughs — The Bronx, Brooklyn, Manhattan, Queens and Staten Island — of New York City and identified Kings County as the area with the highest concentration of minorities with myeloma and the highest death rate attributed to the disease.

As a result, he devised a campaign known as “instead of you coming to us, we go to you.” According to Catamero, who is the associate director of myeloma translational research within the Mount Sinai Health System, the myeloma outreach clinic has tackled many obstacles the underserved community faces. For instance, one of those obstacles is that patients often avoid taking off from work since they cannot afford to lose a day’s income traveling to their appointments.

Rodriguez recently met with the Food and Drug Administration to present the clinic model and seek government support for other initiatives like it.

Williams was a pediatric nurse practitioner who dedicated her career to addressing health disparities in children and teenagers. However, after a multiple myeloma diagnosis and the aftereffects of her disease and treatment, she retired.

But, as Williams’ nominator Dawn Brazell wrote in her essay, she found a new mission.

While speaking with Brazell, Williams said, “Throughout my entire nursing career, I have always taken care of people in marginalized populations, people with chronic health care needs, people with major health disparities.

“But when I was diagnosed, I became even more aware of the health disparities that impact people of color with cancer. And I feel like my career set me up for the place I found myself in, as a patient with multiple myeloma, and seeing the statistics, knowing the outcomes, hearing the stories; I just felt like I had an obligation to give a voice to that.”

Williams co-founded the Charleston Area Multiple Myeloma Network Group after learning that there were no local multiple myeloma patient groups. She then founded and continues to facilitate the Orangeburg Myeloma Network Group in South Carolina. One of the goals of both groups, according to Brazell’s essay, is to educate and empower patients.

“Most people don’t know the symptoms and signs of multiple myeloma, but that’s not the way it has to stay,” Williams told Brazell. “I want to do for multiple myeloma what the Komen Foundation did for breast cancer.”

Chmielewski received a myeloma diagnosis in July 2008. At the time of her diagnosis, Chmielewski was a fifth-grade science teacher.

However, she had to retire from her 29-year teaching career because of the treatments for her blood cancer. Although she was no longer an educator, she began using her experience as a lifelong learner and teacher to educate herself about myeloma.

According to her nominator, Jennifer Ahlstrom, Chmielewski realized that people needed to be better educated about myeloma to obtain better outcomes. So, she took her love of science, coupled with her passion for teaching and launched a Twitter account, @MyelomaTeacher. Here she began to share relevant information related to myeloma to the broader community.

inaugural group of Multiple Myeloma Heroes

® in 2016 — wrote that Chmielewski is routinely one of the top tweeters at major academic conferences, such as the annual meeting of the American Society of Hematology.

In 2018, Chmielewski was tapped by Ahlstrom — who is also the founder of HealthTree Foundation — to become the director of HealthTree University. The aim of this program was, according to Ahlstrom, to develop video curriculum about the blood cancer to help patients and their families learn more about the disease. To date, there are 41 courses with more than 730 video lessons that are taught by 136 experts in the field of myeloma.

Each session is followed by a quiz to encourage retention of the information. The program has become one of the foundation’s most popular offerings, surpassing more than 380,000 views with 17,735 hours watched.

“With a globally viewed program, Cindy is a myeloma hero to hundreds of thousands of viewers around the world,” Ahlstrom concluded in her nominating essay.

Kealy and his family joined a new “club” in April 2014 when he received a multiple myeloma diagnosis, according to his nominator, and wife, Annamarie Kealy.

Immediately following his diagnosis, J.P., Annamarie wrote, wanted to figure out how to best manage his disease while remaining optimistic. A friend told him about a nonprofit organization and an upcoming 5K in a neighboring town outside of Stamford, Connecticut.

Annamarie noted that he registered and set a fundraising goal, which was tripled within a few days. That experience would give him the boost he needed, according to Annamarie, and be the springboard to a life of raising funds for myeloma research.

Not long after the 5K, the family learned about a program that would offer a group of individuals with a connection to the blood cancer to trek across notorious mountains while raising money for research. He was selected to join a group of other patients, doctors and caregivers to trek to Everest Base Camp in Nepal.

Annamarie wrote that they both trained every day while he continued to receive weekly infusions of chemotherapy along with other treatments.

“His resilience and stamina to tolerate this war against his cancer while fundraising and training to climb a mountain, many healthy individuals would never attempt, was inspiring,” she wrote in the essay.

Since that climb to Everest Base Camp, J.P. has trekked Fitz Roy in South America, as well as the Kenai mountains in Alaska.

Through all of these efforts he has helped raise approximately $150,000, of which more than 90% has gone directly toward cancer research.

His focus to raise funds has trickled down to his four children as well, according to Annamarie. She wrote that the children have hosted bake sales and joined in fundraising efforts by running in the New York City half-marathons.

J.P. has also become a mentor for those newly diagnosed with myeloma to help them navigate their “new normal.”

“He has inspired countless patients over the past eight years, but no one more than me,” concluded Annamarie in her essay.

Blau was a professor of medicine in hematology for 27 years and was the founder of the Center for Cancer Innovation at the University of Washington in Seattle. Moreover, Blau was the co-founder of the University of Washington Institute for Stem Cell and Regenerative Medicine and chaired the Molecular and Cellular Hematology Study Section for the NIH.

However, none of those accolades factored into Abra Kelson’s decision to nominate Blau as a multiple myeloma hero. Instead, she wrote, Blau has used his experience, expertise and personal cancer journey — he received a diagnosis of multiple myeloma in 2015 — to passionately care for patients and advance the treatment of the disease.

His ability to make his patients feel heard and valued is evidenced by his care of Kelson’s mother. In December 2011, Kelson was caring for her mother who had terminal cancer. She recalled that her mom wanted to go home to continue receiving care rather than continue to travel the 55 miles for treatment.

Compared with other oncologists who pushed for her to relocate closer to the cancer center, Blau facilitated transfer of care to an oncologist closer to where Kelson’s mom lived.

“His compassion and care for my mother, and her family, remain clear,” she wrote in her essay. “I remember he did not rush or make us feel burdened by the time taken. My mother felt heard, cared for and valued. Because of him, my mother could enjoy a better quality of life in the last months of her life.”

Kelson also commended Blau for his recent work as an entrepreneur. Blau founded All4Cure several years ago with the aim of developing a knowledge-sharing platform where patients, health care providers and researchers could collaborate and share their knowledge about the blood cancer and its treatment.

Via the All4Cure forum, patients with multiple myeloma are encouraged to consult with physicians and researchers around the world.

“Breaking down institutional barriers, All4Cure virtually unites patients, physicians, researchers, and subject matter experts worldwide,” she wrote.

Currently, 756 patients with myeloma and 270 physicians and researchers participate on the platform. He also plans to expand the platform to include clinical trials, integrate operations with cancer centers as well as other technology initiatives.

“Undoubtedly, the foundation for every business decision he makes to expand into the future is his guiding principle of honoring what is in the patient's best interest,” she wrote in her essay.

CURE®’s Multiple Myeloma Heroes® Award Program honors and gives thanks to those who have made it their mission to change the lives of patients with multiple myeloma.

CURE® Multiple Myeloma Heroes® Award Program Recognizes Individuals Focused on Changing the Space

During its 10th annual MPN Heroes® recognition event, CURE® honored the contributions of eight individuals who have made a difference within the field of myeloproliferative neoplasms (MPNs).

These eight individuals received their awards during an in-person celebration — which was also live-streamed to a virtual audience — hosted around the 64th American Society of Hematology Annual Meeting in New Orleans.

Support for the 2022 MPN Heroes® was provided by Incyte.

Kerry Fraser, retired National Hockey League (NHL) referee and patient with an MPN, was the event host and emcee for the recognition event. Despite facing many irate hockey fans throughout his career that spanned three decades, he noted that the scariest and toughest thing he ever had to face was when he was diagnosed with an MPN in November 2017.

He thanked all of the honorees for their tireless efforts in pushing the needle forward in the space and showing compassion for all patients with an MPN.

“(Without your) determination and your compassion, the MPN community would not be what it is today,” Fraser said. “Patients like me would not be thriving. So, on behalf of all MPN patients in the entire MPN community, thank you for all you've done, and all you will continue to do.”

At the 10th Annual MPN Heroes® Program, CURE® honored 8 individuals who make a difference for patients with myeloproliferative neoplasms. 

Former “Saturday Night Live” cast member and co-creator of Showtime’s new comedy series “I Love That for You,” Vanessa Bayer served as the keynote speaker during the recognition event.

Bayer, who was diagnosed with acute lymphoblastic leukemia — a type of blood cancer, and the most common pediatric cancer — at the age of 15, explained how her diagnosis shaped who she is today.

“Having cancer gave me a determination not to be underestimated,” she said during her keynote. “And I think that has a lot to do with where I am today. I can almost pinpoint it to a single moment where this determination really started. I was always a pretty good student, but I remember being in the hospital, just a few days after being diagnosed with leukemia, and my honors biology … teacher called me.

“She said, ‘Vanessa, don't worry about schoolwork anymore. Just focus on getting better. You don't need to worry about getting good grades anymore or anything like that.’ Now, I'm sure she was very well-intentioned with this phone call. But I hung up the phone thinking why because of this random thing that happened to me … should I get worse grades, and then go to a worse college and then have a worse future?”

Bayer explained that she was upset after that conversation and felt everything was unfair, but she was determined to not let cancer define who she was.

“As a result, I was such an overachiever,” she said. “I graduated from high school with straight A's and went on to attend an Ivy League school, the University of Pennsylvania.”

She highlighted the significance of events such as these and what they represent.

“It's about the patients, caregivers, researchers and doctors who are making a difference in the world of MPNs,” she concluded. “Thank you for all of the incredible work that you do.”

Nominated by Kapila Viges, Dr. Raajit Rampal, an associate attending physician at Memorial Sloan Kettering Cancer Center in New York, serves as a scientific adviser to the MPN Research Foundation. With this, he works with other specialists to develop new ideas and initiatives in hopes of bringing change to the rare blood cancer space.

“Those are lofty goals, but in order to try to solve these problems, you have to have a critical mass of people who are highly invested and passionate about this,” Rampal said. “And that's part of what the foundation does is bring these people together. And that gives patients hope; that gives me hope.”

He noted that although the space is changing and improving, he still thinks about the people who didn’t have the ability to access those developments.

“That has to continue to drive us forward,” he concluded. “Everybody sort of has their mission that they have to fulfill in their life. And I, for whatever reason, have (the) ability to do science and to take care of patients. I don't know what could be better for me than that.”

Dr. Steven Applebaum, a hematologist oncologist at UCLA Health in Pasadena, California, has been a physician for more than three decades. And during that span, one patient has been with him the entire time.

Stephanie Covington Armstrong presented to the emergency department more than 30 years ago with severely elevated hemoglobin levels. Applebaum was a fellow at the time and oversaw her case and expressed that she needed to live her life to the fullest and not wait to expire. That conversation, she recalled, made her realize he needed to be her health care provider.

Thirty years later, she considers herself the patient that has been with him the longest.

“I nominated him because I realized that (he is the) reason I have such a great life,” she said. “And the reason I'm such a healthy, happy individual has a lot to do with him being my doctor and his outlook on life. I really, really love the way he shows up for his patients.”

Health care providers have the moral obligation to not only find and develop treatment breakthroughs, but they need to be able to bring them to those who need them most, according to Dr. Naveen Pemmaraju.

“The whole goal here is can you move the field forward, each and every day,” Pemmaraju, an associate professor of medicine at The University of Texas MD Anderson Cancer Center in Houston, said. “We work late nights, weekends, holidays; whatever it takes for patient care, for research demands, and also for ideas and thinking.”

For Pemmaraju, who was nominated by Dr. Gabriela S. Hobbs, being a hematologist oncologist is not just a job for him.

“I'm available 24/7 … this is a calling or a passion,” he said. “So, I look at myself as an ambassador for my hospital, my institution, my patients and my rare disease fields and I take that with great honor.”

Natasha Johnson, who was nominated by Dr. Andrew Kuykendall, is a malignant hematology nurse practitioner at Moffitt Cancer Center and Research Institute in Tampa, Florida.

As a nurse intern, Johnson spent time on an oncology unit where she met a patient with acute lymphocytic leukemia. She would eventually marry that patient and they went on a treatment journey together that consisted of bone marrow transplants.

Unfortunately, he died as a result of complications from one of his transplants. However, she said that experience made her a better provider.

“Because of my experience, I definitely can try to put myself in the same role as the caregivers and look at the whole picture when I'm taking care of the patient,” she said. “I really try to get engaged (with them) and I tell them, ‘I'm a safe space, so just lay it out.’ (And) we'll talk about it and do what we can to make things better.”

Jessica Kuhns, who was nominated by her son Jaden Persaud, was diagnosed with a myeloproliferative neoplasm not otherwise specified in 2016.

A resident of Gibsonia, Pennsylvania, Kuhns credited several advocacy organizations guiding her during her journey. Following her diagnosis, she joined the Facebook group MPNs R US for further clarity regarding her disease. Now, she serves as an Imerman Angel.

As an Imerman Angel, Kuhns connects with people who have similar cancers and serves as a sounding board.

“I try to connect with them on a personal level and let them know that I've been there; that I feel what they’re going through; that I try to connect with them and let them know that they’re not alone,” she said.

Dr. Ghaith Abu-Zeinah, nominated by Jeffrey S. Puglisi, is an assistant attending physician at NewYork-Presbyterian Hospital and specializes in the treatment and research of myeloproliferative neoplasms and related blood disorders.

Abu-Zeinah, who is originally from Jordan, noted that his interest in this particular field was routed in being able to establish long-term relationships with his patients.

“It’s important to have that strong relationship with patients so they feel comfortable expressing their fears and their anxiety,” he said. “We have to understand at a personal level, how patients are doing and not just deal with the objective numbers and objective bone marrow results and things like that.”

Abu-Zeinah also serves on the medical advisory board of the Cancer Research & Treatment Fund. During his tenure, the group put together a podcast around the topic of mental health in patients with MPNs. He explained that not many health care professionals are adequately trained in mental and emotional wellbeing.

“It’s important that instead of focusing only on the blood counts … we have to understand if going through this experience, the diagnosis itself and the treatment course has affected their lifestyle, their mental wellbeing,” he added.

Justine Hallahan was a caregiver to her mom’s partner, Matt, who had polycythemia vera.

Hallahan stepped in, as her mom, Barb – who nominated her for the award – had to maintain her full-time job as Matt’s diagnosis made it difficult for him to work. So, Hallahan would take Matt to his various appointments and serve as his advocate when the pair believed physicians were not actively listening to his concerns.

Although Hallahan said it was a depressing time since they knew there was no cure for the disease, she also noted that the diagnosis ended up being a blessing as well: “He grew into my best friend,” she recalled.

Unfortunately, Matt died in a house fire on Jan. 12, 2020. For Hallahan, she said she doesn’t consider herself Matt’s caregiver. Instead, she explained, she considered Matt to be her caregiver, in turn providing her son with life lessons.

Moreover, Hallahan said she doesn’t view herself as a hero. “I don't feel as though I am a hero,” she said. “This is humanity. This is what we do for the people we care for.”

After receiving a diagnosis of primary myelofibrosis, Mayra Andujar Delgado said she made the choice to not feel sorry for herself but instead make a difference.

One of the first things she decided to do was participate in a 5K for breast cancer research. However, as an avid baker, she chose to sell baked goods during the event. She noted she was the top fundraiser and exclaimed that it was due to her coconut rum cakes.

Recently she participated in a local radio show in Orlando, Florida, to provide insight into the rare blood cancer.

“I’m here to bring awareness to the community in Central Florida,” she said. Everywhere that I go, I say, ‘Mayra with a purpose.’”

Erik Lohrmann, vice president of CURE Media Group, noted that the event provides an opportunity to recognize those who dedicate their careers and lives to serving the community of patients living with MPNs.

“We see their collective passion, and commitment to the MPN community,” he said. “Their stories are inspirational. Each worthy of being called an MPN hero.”

CURE® celebrated the work of eight individuals who go above and beyond to better the lives of people living with myeloproliferative neoplasms, a group of blood cancers. 

Ryan McDonald

Caring for an Ostomy

Ask Questions to Avoid Confusion Around Tumor Testing

CURE® Multiple Myeloma Heroes® Award Program Recognizes Individuals Focused on Changing the Space

CURE® Salutes 8 Individuals’ Efforts During 10th Annual MPN Heroes® Program

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