The Routine Check That Wasn’t: Monica’s Stage 1 Colorectal Cancer
Monica Dean, a San Diego news anchor and mom of three, thought she was just checking off a routine health to-do when she went in for her first colonoscopy at 46 and ended up with a stage 1 colorectal cancer diagnosis. She felt healthy and had neither symptoms nor an immediate family history of colorectal cancer. But thanks to a conversation she’d had with a man who wished he’d gotten screened earlier, Monica followed her gut and got the screening anyway. That decision, she says, saved her life.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
During the colonoscopy, doctors found 13 polyps and a two-centimeter mass that turned out to be stage 1 colorectal cancer. Monica describes waking up mid-procedure, still groggy but alarmed when she saw the medical team’s serious expressions. Her world shifted instantly. What was supposed to be a routine checkup had become the beginning of a life-altering experience.
Even though the diagnosis was shocking, Monica leaned heavily on her faith, family, and inner strength. Waiting for the final pathology results was agonizing. She wrestled with fear, numbness, and uncertainty, but her belief in God kept her grounded. Through it all, she stayed committed to showing up for her family. She even anchored the news 30 minutes after getting her diagnosis because doing something familiar felt oddly comforting.
Tests confirmed that her stage 1 colorectal cancer hadn’t spread. She met with multiple doctors, including the chief of colorectal surgery at UC San Diego Health, and decided on a lower anterior resection surgery. This complex surgery required her to live temporarily with an ileostomy, something she had never imagined but learned to manage with grace and strength.
Post-surgery pathology brought good news: no lymph node involvement and clean margins. She wouldn’t need chemotherapy or radiation. Monica candidly shares the physical and emotional toll of recovery, including fatigue, pain, and adjusting to life with an ostomy bag. But she also emphasizes the clarity that came from it all — how it slowed her down, helped her re-evaluate her priorities, and deepened her faith.
Now, Monica’s passionate about encouraging others to get screened, especially if you’re nearing 45 or have a family history. She wants people to know that catching stage 1 colorectal cancer early can be lifesaving and that leaning into your support system, whether it’s faith, family, or community, makes a world of difference.
Watch Monica’s story to learn more about:
Why she scheduled a colonoscopy despite feeling perfectly healthy.
The one conversation that pushed Monica to get screened, which may have saved her life.
How a surprise diagnosis gave her a deeper sense of purpose and a renewed perspective.
How community and clarity emerged in the most unexpected way.
Name: Monica Dean
Age at Diagnosis:
46
Diagnosis:
Colorectal Cancer
Staging:
Stage 1
Symptoms:
None; caught at a routine colonoscopy
Treatment:
Surgery: Low anterior resection with temporary diverting ileostomy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
How Michelle and Jolene Each Live with Malignant PEComa, an Incredibly Rare Type of Cancer
Michelle and Jolene’s stories are about resilience, advocacy, and the power of awareness. Both women were initially diagnosed with other conditions with overlapping symptoms to their cancer diagnosis. Michelle had excessive bleeding that was attributed to fibroids, while Jolene attributed her symptoms to menopause.
With the COVID-19 pandemic adding to medical delays, neither of them received an immediate diagnosis. They both went through hysterectomies to treat their suspected diagnoses, leading to the shocking revelation that they each had malignant PEComa cancer (perivascular epithelioid cell tumor), a rare and incurable form of cancer.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
For both women, the diagnosis came as a gut-wrenching surprise. Jolene recalls waking up from surgery, groggy from anesthesia, only to learn that things didn’t look right. Michelle, a researcher by nature, turned to Google for answers, even though her doctors warned against it. The fear of the unknown weighed heavily on them, but they knew they had to press forward.
The reality of treatment set in quickly. There is only one FDA-approved therapy for malignant PEComa cancer, a drug that became available just in time for Jolene to start in 2022. Michelle initially had a strong response to it and she remains stable today. Still, both women live with uncertainty. Jolene, a mother, made it her mission to be present for her daughters’ milestones, focusing on each day rather than an unknown future. Michelle, on the other hand, has embraced self-advocacy, meticulously documenting her medical journey so others can learn from it.
Michelle and Jolene are determined to raise awareness of malignant PEComa cancer. Unlike breast cancer or leukemia, PEComa is virtually unknown, even among medical professionals. To note, PEComas are usually benign (noncancerous) and localized, but some are malignant (cancer), which is what both Michelle and Jolene were diagnosed with. They believe that through advocacy and exposure, more people will recognize the symptoms early and push for proper diagnoses.
Their advice is simple yet powerful: never lose hope. Every case is different, and statistics don’t define a person’s future. They emphasize trusting one’s medical team, staying informed, and, most importantly, finding a support system.
Watch the video to find out more from Michelle and Jolene about:
How a selfless act of love led to an unexpected diagnosis.
The one FDA-approved drug that stands between them and an uncertain future.
Why raising awareness for rare cancers like malignant PEComa is more important than ever.
The advice they have for everyone who’s facing a tough diagnosis.
Name: Michelle C.
Diagnosis:
Malignant PEComa cancer (perivascular epithelioid cell tumor)
Staging:
Stage 4
Symptoms:
Heavy bleeding
Asymptomatic lung masses discovered through kidney donor evaluation
Thank you to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Michelle and Jolene were both diagnosed with an incredibly rare type of cancer. Michelle was diagnosed in 2023, while Jolene was diagnosed two years prior. They received a diagnosis so rare that it affects less than one out of 1 million people each year: malignant PEComa (perivascular epithelioid cell tumor). According to the National Organization for Rare Disorders, this diagnosis is “most likely to occur in middle-aged females, with some studies reporting PEComas are five to seven times more likely in females than males.”
I was experiencing some bleeding… it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much.
Jolene
The Red Flags for Michelle and Jolene
Michelle: Originally, I had fibroids, so I experienced excess bleeding during my menstrual cycle. At that time, I thought it wasn’t typical, so I called the doctor and they said that irregular menstrual cycles are normal sometimes.
Jolene: I was experiencing some bleeding and I thought it was possibly related to starting menopause. It was also during COVID, so I wasn’t going to the doctor a lot. I didn’t worry about it and it continued to get worse to the point where I was sent to the emergency room because I was bleeding so much. They did some scans, thought it was a fibroid, and proceeded from there.
To treat each of their other diagnoses, both Michelle and Jolene opted for hysterectomies, a surgical procedure that removes the uterus. The procedure would uncover cancer for both of them.
Hysterectomy Uncovering Their Cancer
Jolene: I had an early morning surgery and they told me how long it would possibly take. I remember coming out of the anesthesia and seeing the clock in the recovery room — it was three hours later than I’d thought. My surgeon told me that when they started the surgery, things didn’t look right, so she sent a sample off for biopsy. They didn’t know what kind of cancer it was, but they knew it was cancer. I was so out of it that I just accepted it.
Michelle: I was scared. I’m the type of person who when I don’t know what something is, I have to Google it and look it up, which my doctors don’t recommend. They told me that Google is not my friend. But I always want to learn. I love reading and doing my research. I did Google it and it was scary. My main concern was the life expectancy.
Michelle and Jolene received the news no one ever wants to hear: the cancer is back and now it’s Stage 4.
I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Michelle
Finding Out They Have Stage 4 Cancer
Jolene: I can’t even describe how excruciating the pain was. Internal bleeding is one of the worst pains that you can feel. I wasn’t at the main hospital because I went to the hospital where I thought I would be able to get in faster and they performed a procedure to slow down the bleeding.
I was in shock. I was diagnosed in May. That happened in January and in February, I had another surgery. The tumor was fairly large. Recovery was difficult. It was painful and took quite a while, but the margins were clear. No lymph node involvement. At that time, the doctor told me that I was now stage 4 and it wasn’t curable.
Michelle: My brother was suffering from renal failure. He didn’t want to talk about it, but I went behind his back and got tested to see if I was a potential match. I went through the donor evaluation, which is a pretty rigorous testing process to make sure that the donor is healthy enough to donate. At the end of the evaluation, they did a chest X-ray and found multiple masses in my lungs. I was shocked because I wasn’t feeling short of breath or noticing anything strange. I didn’t have any symptoms.
Jolene: You’re always living in fear, just knowing how quickly it came back and how severely the first time. So I can give you an example. Three weeks ago, I felt a lump kind of in my upper leg, and then a week later I that was very tender. I felt another one in like my armpit area. And those areas aren’t really covered by the CT scans I get every three months.
So to say that I was a mess is putting it nicely. This past week, they scheduled a PET scan for me right away. I don’t have the final report, but the nurse practitioner called me and said it looks good.
It’s really hard not to react to any little lump [or] bump, because you know that catching it more quickly is probably to your benefit.
After Michelle and Jolene found out about the malignant PEComa, they learned what their future looked like. The FDA had only approved one therapy for malignant PEComa, approving nab-sirolimus in 2021 for patients with “locally advanced unresectable or malignant PEComa.” (FDA)
Discussing The Only Treatment Option for Malignant PEComa Cancer
Michelle: I asked, “What’s going to happen? Is my hair going to fall out?” When you think about chemotherapy, you think of the worst. Am I going to be having extreme sickness? Am I going to lose my hair? Am I going to be able to function? Those were my main concerns. I was okay until that appointment. I was apprehensive, but I was okay until we started discussing it because then it was real. I cried at that appointment.
Jolene: It was approved by the FDA a month before I started it, so I couldn’t be more thankful that they were able to develop that when they did. I started in April 2022 and told my daughters that it isn’t curable, that I’ll be on this medication, and that I will be with them for as long as I can. That’s what I continue to tell them, that I will be here as long as I can be. I honestly didn’t think I would be here because based on the clinical trials, it typically works for a year and a half to two years.
Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Michelle
Michelle: That was an, “Oh, s***,” moment. I thought, “One drug. Great.” My mind always goes far, so I thought, “What happens if it doesn’t work? What do I do?”
I’m grateful that there is a drug because that drug wasn’t available in 2015 when I received my initial diagnosis. If my disease was malignant from the beginning, I don’t know if they would have been able to treat it. Initially, I had an amazing response to the drug. I had rapid and significant shrinkage of tumors, and now I’m stable. Because this is a rare and incurable cancer, the goal is to maintain quality of life and stability.
Looking at the Future Living with Malignant PEComa Cancer
Michelle: In the beginning, I felt doomed. Am I going to live to see retirement? Am I going to be able to do some of the things I want to do? That was concerning. The unknown was scary. Nobody knows when their time is up, but that’s always in the back of your mind with cancer. I don’t necessarily dwell on it, but every once in a while, it’ll pop up. What do I do? Do I retire now or do I make sure that I have something for later? I’m still working part-time because I need some kind of normalcy in my life. I need structure and a purpose.
My daughters drive me to keep going… I want to be here and get my girls in as good of a place as they can be.
Jolene
Jolene: My daughters drive me to keep going and the fact that there isn’t another option. I will take what I have right now with the limitations that I have, which are the side effects. But given the alternatives, I want to be here and get my girls in as good of a place as they can be. I can’t imagine losing a parent as a teen or early 20s because my parents are still alive and doing well, and they’re a big part of my support system.
What Michelle Has Learned
Michelle: The one good thing out of this is I learned to advocate more for myself. I learned how to ask more questions and how to push a little bit more. In the beginning, I said if this was going to kill me, I want everybody to know about it. Not that I want to donate my body to science, but I want people to see my records and learn something. I take meticulous notes. It sounds morbid, but when I go, I’m going to have someone hand over my binder with all of my notes and paperwork.
Jolene’s Biggest Advice
Jolene: Never give up hope. Don’t look at other people who might have the same diagnosis and assume that you will follow the same path. I have sisters who are nurses, and they told me not to Google and to look at what has happened to other people. Your care team knows you the best and they’re focused on you. You don’t know what’s going to happen. I feel like right now at least, I’m proof of that.
When it came back in my liver, my goal was to be around for my youngest daughter’s high school graduation and my middle daughter’s college graduation, and those were in May and June 2024. I’m still hanging on. I hope and pray that I will be around for a long time to come but at the same time, facing the reality that we don’t know.
People don’t know what PEComa is… Hopefully, people will become curious and talk about it more.
Michelle
Raising Awareness for PEComa Cancer
Michelle: I want people to be aware of PEComa. I want people to know what it is. When somebody says breast cancer or leukemia, people know what it is, but people don’t know what [malignant] PEComa is.
There are a decent amount of people who I’ve run into that say they know what a sarcoma is, which is rare also, but the subtype is ultra-rare. I want people to know what it is and to become curious. If they know what it is and people talk about it, there’s more exposure. Awareness is very important to me. Hopefully, people will become curious and talk about it more.
Special thanks again to Aadi Bioscience for supporting our independent patient education content. The Patient Story retains full editorial control over all content.
Thank you for sharing your stories, Michelle and Jolene!
Symptom: Mild back pain on her left side that escalated in severity Treatments: Chemotherapy (etoposide, doxorubicin, and cisplatin), mitotane, surgery, lenvatinib ...
Symptoms: Swelling in the face, stomach, hands, and feet, high blood pressure, acne on back and chest, itchy and tingling tongue, burning in the eyes with discharge, hair loss on the head, hair growth on upper lip and chin, bloating and stomach pain, food aversions, easy bruising, slow healing, missed periods
Treatments: Surgery to remove the tumor, chemotherapy (EDP-mitotane), radiation (SBRT), immunotherapy (Keytruda/pembrolizumab), targeted therapy (Lenvima/lenvatinib) ...
Symptom: None; found the cancers during CAT scans for internal bleeding due to ulcers Treatments: Chemotherapy (capecitabine + temozolomide), surgery (distal pancreatectomy, to be scheduled) ...
Navigating Life After Cancer at 18: Lauren’s Primary Mediastinal Large B-Cell Lymphoma Story
Lauren reflects on her experience of being diagnosed with primary mediastinal large B-cell lymphoma, a type of non-Hodgkin’s lymphoma, at just 18 years old. Growing up, she had a busy and active life, balancing school, sports, and church activities. However, in the summer of 2019, after graduating high school, she started noticing some unusual symptoms. She developed a persistent dry cough that wouldn’t go away despite various treatments. Over time, she became extremely fatigued, had trouble breathing, and noticed swelling and discoloration in her left arm. These signs eventually led to her discovering a lump under her arm, prompting her to visit her pediatrician.
Despite several visits and tests, the doctors initially brushed off some of Lauren’s concerns. Her pediatrician detected a heart murmur and then referred her to a cardiologist. After more tests, the cardiologist’s findings led Lauren to the emergency room, where a CT scan revealed a large tumor in her chest. An oncologist quickly confirmed the worst: lymphoma. This shocking diagnosis changed everything, and doctors rushed her to a larger hospital for further testing, where she learned the tumor was pressing on her lungs and heart.
Doctors diagnosed Lauren with a rare subtype of non-Hodgkin’s lymphoma called primary mediastinal large B-cell lymphoma. Her treatment plan included six rounds of chemotherapy over six months. She experienced significant side effects, including fatigue, hair loss, mouth sores, and flu-like symptoms after each round. But through it all, she found solace in her faith and began documenting her experience through social media. Sharing her story on YouTube allowed her to connect with others facing similar battles, turning her experience into a source of strength for herself and others.
After completing chemotherapy, doctors declared Lauren cancer-free. She celebrated this milestone but acknowledged the challenges that came afterward, such as health anxiety and long-term side effects, including fertility concerns. Nonetheless, she has embraced her life post-cancer, celebrating the lessons learned and the life still to be lived. Lauren’s story is one of resilience and empowerment. She has used her experience to help others, share her journey, and find her true passion in marketing and public relations.
Watch her story to hear from Lauren on:
How she turned her cancer diagnosis into a platform for hope and connection.
How she faced the unexpected with faith and strength.
How she navigated the toughest challenges of chemotherapy, including hair loss and the emotional toll.
What she wishes she had known during treatment and how she found purpose in the hardest moments.
Name: Lauren Mae D.
Age at Diagnosis:
18
Diagnosis:
Primary Mediastinal Large B-Cell Lymphoma (PMBCL)
Symptoms:
Dry cough
Extreme fatigue
Trouble breathing
Swollen and discolored left arm
Lump under the arm
Treatment:
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
From Fatigue & Flares to Self-Advocacy: Chaylee’s Psoriatic Arthritis Experience
Editor’s Note: At The Patient Story, we’ve built a platform where real stories empower people facing cancer—but that same storytelling power can uplift those living with other serious health conditions, too.
We’re expanding our reach to include chronic autoimmune diseases like psoriatic arthritis—a condition that’s often misunderstood and underdiagnosed, especially in young adults. In this story, Chaylee shares her experience navigating overwhelming fatigue, joint pain, and years of frustration before finally getting the right diagnosis. From treatment setbacks to mental health challenges and moments of advocacy, her story offers raw honesty, encouragement, and a reminder that no one should face chronic illness alone.
When Chaylee started feeling wiped out all the time and noticed her joints swelling, she knew something was wrong, but she didn’t expect it to be psoriatic arthritis. At the time, she had just graduated high school and was starting college. Instead of soaking up her independence, she found herself stuck on the couch, too fatigued to move and dealing with painful, swollen joints. It wasn’t just uncomfortable; it was life-disrupting.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Her first doctor brushed her off with a fibromyalgia diagnosis and a prescription that left her feeling foggy and unable to function. She dropped out within a week of starting college, losing her full-ride scholarship. That low point was painful, but it pushed her to take control. Chaylee moved six hours away to Boise for better care, which paid off. A new rheumatologist listened to her, took her symptoms seriously, and finally diagnosed her with psoriatic arthritis in January 2023.
Looking back, the signs were all there, especially the scalp psoriasis Chaylee had dealt with since she was a pre-teen. But no one ever told her that psoriasis and psoriatic arthritis often go hand in hand. That lack of awareness was frustrating, especially since early intervention makes such a big difference.
While navigating chronic illness as a young adult isn’t easy, Chaylee found ways to adapt. Community played a huge role. Connecting with others online who understood what she was going through made her feel less alone. She also tapped into creativity, making spoon jewelry to connect with fellow patients and joining the Young Patients Autoimmune Research and Empowerment Alliance (YPAREA) to help make research more accessible for people her age.
Chaylee’s treatment took time to figure out. Celecoxib didn’t work and methotrexate helped but came with heavy side effects. Eventually, she started adalimumab injections, which gave her more consistent relief from psoriatic arthritis symptoms. While flare-ups still happen — especially in cold weather or under stress — she’s found ways to manage them.
Some of Chaylee’s biggest lessons? Self-advocacy is everything. Learning to speak up, ask questions, and request better care changed her life. She’s also passionate about mental health — reminding others that your worth isn’t defined by productivity and that it’s okay to rest. Psoriatic arthritis may have changed her plans, but it’s also helped her discover new passions, connect with others, and live more intentionally.
Watch Chaylee’s story to learn more:
Discover how Chaylee rebuilt her life after her chronic illness disrupted her future plans.
See how a correct diagnosis turned confusion into clarity and relief.
Learn how finding creative outlets helped transform isolation into empowerment.
Explore how Chaylee is breaking stereotypes about psoriatic arthritis and young adults.
Get inspired by how she balances work, advocacy, and well-being despite chronic pain.
Name: Chaylee M.
Age at Diagnosis:
19
Diagnosis:
Psoriatic Arthritis
Symptoms:
Severe fatigue
Swollen fingers and face
Joint weakness
Flaky skin
Rashes
Long-term scalp psoriasis
Treatments:
Celecoxib
Methotrexate
Adalimumab injections
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Painful cracked skin on the scalp, inflammation on the top of the foot, joint pain in the foot Treatments: Shampoos, creams, injections, pills, prescription medications, biologics
From Itchy, Painful Skin to Empowerment: How Victoria Navigates Life with Plaque Psoriasis
Editor’s note: At The Patient Story, we’ve built a platform where real stories empower people facing cancer. But the need for that same kind of understanding and connection extends far beyond cancer to other serious health conditions.
We’re expanding our reach to include more of these lived experiences—because they, too, can be life-changing. Psoriasis is one such condition: a chronic autoimmune disease that affects millions and remains widely misunderstood.
In this story, Victoria shares what it’s like to live with plaque psoriasis—from painful flares and treatment trials to stigma, advocacy, and unexpected sources of hope. If you’re looking for authentic insights into psoriasis treatments, emotional resilience, and the power of community, her voice will resonate.
Victoria, known online as @flyforaginger, is a content creator and social media manager based in San Diego, California. She was diagnosed with plaque psoriasis in 2010 and describes the experience as frustrating yet hopeful. Since psoriasis is an autoimmune disease, finding the right treatment isn’t a one-size-fits-all approach — it’s about trial and error, and adapting to changes over time. Though the process can be exhausting, she remains grateful for the many treatment options available.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Victoria’s first symptoms appeared in middle school as painful, cracked skin on the back of her scalp. By the time she reached high school and college, inflammation on her foot became another concern. What started as a mysterious bump led to her plaque psoriasis diagnosis and, eventually, psoriatic arthritis. Unfortunately, not every doctor she saw took her seriously. A rheumatologist even dismissed her arthritis symptoms entirely, highlighting the all-too-common struggle of being told “nothing is wrong” when, in reality, something very much is.
Determined to find answers, Victoria continued seeking care. While some doctors were dismissive, others went above and beyond to help her access treatment. One dermatologist was so frustrated by her lack of progress that he offered expensive injections at a fraction of the cost. But Victoria knew that couldn’t be her only option—so she sought another opinion and discovered better treatments. This experience reinforced a vital lesson: doctors are experts, but patients know their bodies best. Advocating for yourself is crucial.
Plaque psoriasis impacts more than just Victoria’s skin; it takes a toll on her mental health, confidence, and daily life. Flares can be painful and emotionally draining, especially since stress is a major trigger. And because she’s a content creator, showing her face online — sometimes during a flare — can feel vulnerable. However, sharing her reality has created a supportive community where people openly discuss their struggles, celebrate their wins, and exchange tips. Turning her experiences into moments of education and advocacy has been a game-changer.
As a plus-size woman, Victoria faces stigma not only about her body but also about her skin condition. Some people blame her plaque psoriasis on her weight, pushing harmful and inaccurate narratives. Rather than engaging with negativity, she focuses on spreading accurate information and fostering a compassionate community. She reminds others that psoriasis isn’t anyone’s fault—what works for one person may not work for another. No matter what, everyone deserves respect and understanding.
Over the years, Victoria has tried countless treatments, including over-the-counter creams, prescription medications, steroid injections, and biologics. For eight years, she participated in clinical trials, which provided access to cutting-edge treatments at no cost. While some worked and others didn’t, clinical trials gave her better care than she had ever received elsewhere. She encourages others to research trials as an option, emphasizing their safety and the attentive medical oversight involved.
Victoria urges people to curate their social media feeds with uplifting, empowering voices. Following people who embrace their conditions and exude confidence can make a world of difference. She also emphasizes the importance of mental health care—whether that’s therapy, deep breathing, or simply unwinding with a favorite TV show. At the end of the day, she wants people to know they are not alone. Community, advocacy, and self-love can turn even the hardest days into something meaningful.
Watch Victoria’s story to find out more:
The doctor said, “There’s nothing wrong with you”—but Victoria knew better.
How an artistic photo shoot of her psoriasis flare changed everything.
From stigma to self-love: Victoria’s raw take on living with psoriasis.
What she learned from eight years of clinical trials (and why she recommends them).
The unexpected way social media became her greatest source of support.
Name: Victoria V.
Age at Diagnosis:
19
Diagnosis:
Plaque Psoriasis
Symptoms:
Painful cracked skin on the scalp
Inflammation on the top of the foot
Joint pain in the foot
Treatments:
Shampoos
Creams
Injections
Pills
Prescription medications
Biologics
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Tell us by signing up for updates and consider sharing your own experience. The more voices we bring together, the stronger and more supportive this community becomes. Let’s build a library of real, authentic stories—told by you, for others who need to hear them.
Dr. Blue on Improving Myeloma Care for Black Patients
Interviewed by: Stephanie Chuang Edited by: Katrina Villareal and Chris Sanchez
Brandon Blue knew at a young age that he wanted to help people. Decades later, he’s done that and so much more, changing and saving the lives of people who’ve been diagnosed with cancer. Now known as Dr. Brandon Blue, he’s become a well-known hematologist-oncologist at Moffitt Cancer Center, a comprehensive cancer research center recognized by the National Cancer Institute.
In this story, learn key tips on how people can make a difference for themselves and their health, and regarding what can help save lives, specifically for his specialty: multiple myeloma, an illness that disproportionately impacts people in his own communities, including Black/African-Americans.
In fact, despite how busy Dr. Blue is as someone who does research and helps countless patients, he decided to join a group of patients, advocates, and other myeloma stakeholders for more than two years to collaborate on how to improve the care of underserved groups like Black/African-American multiple myeloma patients and their families. They put together a report that was selected for presentation at the largest gathering of top doctors and researchers in blood cancer called the American Society of Hematology (ASH) annual meeting, a presentation led by a patient advocate named Oya Gilbert.
Watch this second episode of our series to hear about their top solutions on how to serve as many people as possible dealing with the hardships of a cancer diagnosis.
Thank you to Pfizer for supporting our patient education program. The Patient Story retains full editorial control over all content.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Whatever I do in life, it’s going to involve helping people.
My Path to Medicine
When I was a kid, I was always good at math and science. My mom always told me that if you get good grades, good things will happen. When I was a senior in high school, I wanted a senior ring, but we didn’t have the money for it. So my mom said, “Get a job, and then you can pay for it.” Right across the street from my house was a nursing home that had this big “Help Wanted” sign.
I went over there and asked if I could do any work for them. And they hired me right then and there. I realized I didn’t know what it meant to work in a nursing home. But it was fantastic for me because I got a chance to see people who needed a lot of help, and I realized, hey, I can help them. I worked in the kitchen, and my job was to deliver the food to the patients, so I didn’t help them medically, but I do think that I helped them in a way because I was very inquisitive.
So I’d always get in trouble for leaving the kitchen and going to talk to people. And I felt like I was drawn to people, and it was my chance to be able to talk to them. And that was my first glimpse of my mission. Whatever I do in life, it’s going to involve helping people.
In the nursing home, the holidays were a big deal. Unfortunately, families couldn’t come to visit many of the patients. I remember a lady with a terminal illness or condition. She didn’t have too long left to live, and her family wasn’t there during the holidays. So I knew that time spent with her meant the world to her because, sadly, that was probably her last Christmas. And so I decided I was going to sit with her for a little while. It was fantastic for her to spend time with someone again, especially during the holidays. That was something that I’ll never forget.
So, as a teenager, I decided that I wanted to help people, and I knew I was good at math and science. I thought, “Well, how can I put these together?” So, after high school, people started asking, “What are you going to do next?” And I thought, “Oh my gosh, they want me to have my life figured out at such an early age.” And so I responded, “I think a way that I can use my math and science skills to help people is to become a doctor.”
I knew nothing about being a doctor. But I had seen the doctors who were helping the people at the nursing home, and so that was how I first thought that I could do it, too. I didn’t know what it took, but at least that was my idea of what I wanted to do, even though I didn’t know what that path looked like.
I didn’t have any family members who were doctors. I didn’t have any guidance.
I saw my first Black/African-American doctor when I was in medical school. He was one of my teachers. For me, that was my first I-can-actually-do-this moment. It went from an abstract thought that I didn’t know how to actualize, to — this guy came from where I came from, and he talks like me, looks like me, and he’s making it. So maybe I can make it too.
I want to inspire people to say, “Hey, you go to school, you get good grades, and you can become a doctor.”
The Power of Realizing My Dreams
As much as I’m the first in my family to be a doctor, I want to make sure that I’m not the last. We have to make sure that we’re always giving back. And so a big thing for me is to make sure that other Dr. Brandon Blues are following behind me. If, when I was young, someone had been able to guide me and say, “This is the road, this is the path, this is how you do it,” then I might have avoided some of the pitfalls of youth. So that’s one of my main goals: to give back and help people.
I played a lot of basketball and football. For a lot of folks in my community, that was their way of making money. That’s what everyone thought. You play these sports, you excel at them, and that’s how you’re going to be successful in life. I want to inspire people to say, “Hey, you go to school, you get good grades, and you can become a doctor.” And that’s one of the aspirations that I want little kids to develop, instead of just football or basketball aspirations.
I connect with people in three places. The first is the community center. Kids go there after school to play basketball and do homework. I tell them, “I know you’re only in middle or high school, but let me tell you what the next ten years could look like if you take your math and science classes seriously.”
The second place is the barbershop. In the Black/African-American community, we trust our barbers. Plenty of conversations that happen there don’t happen anywhere else. I want to make sure that health care is discussed there, too. The third place is the church. That’s a cornerstone for minority communities. I want to make sure that, as much as people trust their faith leaders, they can also trust their doctors. I want to let people know that we only want to help.
People say, “I want a doctor who looks like me.” I have patients who drive from all over the country to see me. Unfortunately, there are not enough minority doctors. I do hope that that changes ten or 20 years from now. I know that the connections that I’ve made with my patients are priceless. And so I just want to make sure that I do the best thing for them and that people know that you can come from my community and still be successful.
The rate of having multiple myeloma is about twice as common in the Black/African-American community.
Multiple myeloma is a cancer that unfortunately needs heavy treatment, like chemotherapy, to help people get better. However, it’s not a curable disease, so it’s more of a lifelong illness.
Typically in medical textbooks, the average age of diagnosis for multiple myeloma is 69. For Hispanics, it’s 62. For Black/African-Americans, it’s 64. Why does that matter? Because when you go to the doctor complaining about certain symptoms, they’re looking for someone who is nearly 70 and you’re in your early 60s, they’ll say, “Oh, you couldn’t have that.” Unfortunately for the minority community, multiple myeloma is one of those things that we get at a younger age. Also, the rate of having multiple myeloma is about twice as common in the Black/African-American community.
Common Symptoms of Multiple Myeloma
Multiple myeloma is a blood and bone marrow disorder. Unfortunately, it’s not something that you can touch. With other cancers, there might be a lump or something that you can see, like blood in the stool. But because this deals with the blood and bone marrow, it happens on the inside.
The main symptoms that people will feel would be sudden things like back pain because as that marrow fills up with cancer, bones sometimes fracture and break. Another thing that can happen is it can overload the kidneys, so the kidneys shut down or there may be changes in the urine. But a lot of times, that happens when the cancer is very advanced.
We have all the greatest minds from around the world sitting down together and trying to figure out how to cure cancer and make things better for people.
Screening for Multiple Myeloma
Early detection saves your life down the road. If we can detect multiple myeloma before the symptoms kick in, then we prevent lifelong worry and hurt. How can people do that? How can they screen for multiple myeloma?
There is an important research study that I would love everyone to participate in. The PROMISE study is meant for early detection of multiple myeloma and its precursor called MGUS (monoclonal gammopathy of undetermined significance). If you are 30 years old, live in the United States, and are Black/African-American, or have a family member with either multiple myeloma or MGUS, then you can get tested for free.
The big thing about cancer care and health care in general is that we want to be doing something better next year, or in ten years, than how we’re doing now. The only way that that happens is through research — knowing what everybody else around the world is doing and putting our minds together and saying, if that’s working, let’s take that forward.
Turning Conversation Into Action: A Collaborative Approach to Health Equity Solutions
That’s what I would say is happening here. We have all the greatest minds from around the world sitting down together and trying to figure out how to cure cancer and make things better for people. And that’s something I’m happy to be involved in. They might say, for example, African Americans have a higher rate of getting cancer (myeloma) or they might get diagnosed at an earlier age (64 versus 69). This is exactly why this research is a little bit different from anything else because we talked about the problems and we also talked about actionable steps to make things better for people starting on day one.
There were so many different people at the table, each person with their role in making things better. We can’t put this all on just the doctors or just the patients and say, well, if the doctors or the patients did this, then things would be better. It took a whole village. I think that’s the real key to the solution. I think that everyone was trying to do things their own way — the different groups each had a plan, but they weren’t all talking. So this is how we put everybody together to work together and make it better. It’s an awesome collaboration.
Years ago, cancer was a death sentence. Thanks to all the innovations, that is no longer true.
My Recommendations for Patients and Care Partners
If I had to choose one actionable step, it would be for people to get second opinions. Patients didn’t know that once they get diagnosed with cancer, they can come to an expert like myself and see if what their doctor is doing is the right thing. That’s important because there can be so many quick advancements in medicine. If your doctor is still doing things from last year or from two years ago, you might not be getting the best care. So it would be a game changer if everyone got a second opinion.
One of the important things for me is not letting cancer define people’s lives. Yes, you are a person with cancer, but you’re much more than that. I have a patient who wanted to make sure that she saw her daughter graduate from high school. One of the biggest advances that we’ve had for the cancer of multiple myeloma is called CAR T-cell therapy. Not only was that lady able to see her daughter finish high school, but she’s also now about to see her daughter graduate from college. She might not have been able to do so without some of these advancements that we’re talking about at these conferences.
Years ago, cancer was a death sentence. Thanks to all the innovations, that is no longer true. As a doctor, I try to make sure that these innovations are available to my patients and that I’m doing the right thing.
I remember a patient with severe cancer who wasn’t highly educated and didn’t understand how severe his cancer was because it wasn’t something he could touch, but he just knew that he felt bad. We tried so many different types of treatment, but unfortunately, his cancer was just too advanced. To this day, that’s something that just eats at me, if we had gotten him earlier and treated him earlier, maybe he would still be here today.
My father had a blood disorder known as diffuse large B cell lymphoma, which is a cancer that affects the lymph nodes. I’m happy to say that after two years, he’s in complete remission. He has a special IV called a port, and he gets to take his port out. Of course, he’s very happy about that. I’m happy to be involved in it because I am a cancer doctor who specializes in blood cancer. I can be a part of his journey, not only from a doctor’s side but as a son. I can educate people and say, “I know what it’s like to be a caregiver. I know what it’s like to have a family member with this cancer, and I never wish that upon anyone.” But if you do have it, just know that I’ve been able to walk a mile in your shoes.
Special thanks again to Pfizer for supporting our patient education program. The Patient Story retains full editorial control over all content
Oya Gilbert had always been full of energy. A father, a hip-hop lover, and a man who rarely got sick. But in 2015, his body started sending him signals he couldn’t ignore. But for two years, doctors dismissed his symptoms as anxiety. Watch Oya’s story from misdiagnosis to myeloma advocacy.
Symptom: None; found through blood tests Treatments: Total Therapy Four, carfilzomib + pomalidomide, daratumumab + lenalidomide, CAR T-cell therapy, selinexor-carfilzomib
Stage 4 Colon Cancer at 36: Kasey Shares Why Early Screening Can Save Lives
Kasey’s world changed when she was diagnosed with stage 4 colon cancer. In March 2024, her cancer was initially diagnosed as stage 2A, but by October, it had metastasized. It was unexpected and unnerving, something she never thought she’d have to face at 36 years old. Yet, through it all, Kasey fought to stay informed, advocate for herself, and share her story to help others recognize symptoms and push for the care they deserve.
Interviewed by: Taylor Scheib Edited by: Katrina Villareal
Kasey’s first symptoms started in 2021 after giving birth to her third son. She experienced extreme abdominal cramping, which she initially thought was hormonal. By 2023, the pain persisted and she sought answers from her primary care doctor. The road to her stage 4 colon cancer diagnosis wasn’t straightforward — Kasey’s symptoms were attributed to various conditions, including Hashimoto’s disease and guttate psoriasis. Despite dietary changes and lifestyle adjustments, new symptoms emerged, including mucus in her stool and, eventually, rectal bleeding. Even then, the doctors dismissed her concerns and delayed her colonoscopy for nine weeks. When she finally had the procedure in February 2024, doctors found a large mass. Almost immediately, they told her that it was cancer.
She underwent surgery in March, during which the surgeon removed 55% of her colon. While her lymph nodes tested negative, Kasey knew she had to make tough treatment decisions. Her doctor recommended the Signatera test, which checks for circulating tumor DNA (ctDNA). It came back negative, leading her doctors to advise against chemotherapy. But life threw another curveball — by July, Kasey discovered she was pregnant. A routine blood test revealed skyrocketing CEA levels, a marker for cancer. Heartbreakingly, she had to make the devastating choice to terminate her pregnancy to ensure she could monitor and treat her cancer. In September, scans confirmed progression to stage 4 colon cancer.
Since then, Kasey has been undergoing chemotherapy while maintaining her career, caring for her family, and finding strength in her faith. She has learned the importance of self-advocacy, pushing for screenings, and questioning medical assumptions. Through social media, she shares tips and insights on navigating treatment for stage 4 colon cancer, hoping to educate and empower others.
Kasey’s message is clear: cancer doesn’t define her. It’s a challenge, but it doesn’t mean that life stops. She wants people to understand that stage 4 colon cancer doesn’t always mean the worst, that community and support make a difference, and that listening to your body and pushing for answers can be lifesaving. Her story isn’t just about illness — it’s about resilience, awareness, and the power of taking control of your health.
Watch Kasey’s story to find out more about:
How a delayed colonoscopy changed everything — why early screenings are crucial.
How Kasey fought for answers when doctors dismissed her symptoms.
The emotional and medical challenges of pregnancy after a cancer diagnosis.
Why self-advocacy is key: “If I hadn’t pushed, I wouldn’t be here.”
The surprising lessons cancer taught her about life, family, and faith.
Name: Kasey S.
Age at Diagnosis:
36
Diagnosis:
Colon Cancer
Staging:
Stage 2A in March 2024, which metastasized to stage 4 in October 2024
Symptoms:
Extreme abdominal cramping
Mucus in stool
Rectal bleeding
Black stool
Fatigue
Weight fluctuations
Skin issues: guttate psoriasis
Treatments:
Surgery: Colectomy: removed 55% of right & transverse colon; salpingectomy: tubal removal
Chemotherapy
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Facing Cancer as a Young Mom: Melanie’s Stage 4 Nasal Squamous Cell Carcinoma Story
Despite the excitement of expecting her first child, Melanie faced a life-altering diagnosis at 30 weeks pregnant: nasal squamous cell carcinoma. Her symptoms began subtly, with nosebleeds, sinus pressure, and congestion, all of which she attributed to pregnancy. However, when Melanie’s left eye started to protrude, she sought medical attention. An ENT attempted to examine her nasal cavity but found a mass blocking the scope. Urged to seek emergency care, she underwent an MRI and biopsy, confirming the presence of cancer.
The stage 4 nasal squamous cell carcinoma diagnosis brought overwhelming fear and uncertainty. Melanie worried about being there for her child and the possibility of someone else raising her. She had to make treatment decisions quickly. Because the tumor had grown into critical areas, immediate surgery was not an option. Instead, doctors recommended chemotherapy, which she would begin after giving birth. Melanie’s hopes for a natural birth shifted when complications led to an emergency C-section. The moment her daughter was born brought a mix of relief and profound love. She held her baby for a day before beginning chemotherapy in the hospital.
Chemotherapy provided initial success, shrinking the tumor in her nasal cavity and allowing Melanie to breathe more easily. However, the tumor in her eye orbit remained unchanged due to poor blood flow in that area. With no clear margins for radiation, doctors advised surgical removal of her left eye and surrounding structures before proceeding with further treatment. The first surgery replaced lost tissue using a skin flap from her arm, followed by radiation therapy. Radiation, unexpectedly, was more physically challenging than chemotherapy, leaving her exhausted and struggling to eat. Despite this, she avoided a feeding tube and completed treatment.
Beyond the physical toll, cancer reshaped Melanie’s mental and emotional well-being. The loss of breastfeeding and the shift in parental roles meant that her husband had to take on responsibilities that they hadn’t anticipated. He became the primary caregiver, ensuring she had the rest needed for recovery. Melanie found solace in therapy, initially struggling to connect with traditional therapists who lacked medical experience. A hospital-based therapist and support groups provided better understanding, though finding peers in similar circumstances proved difficult due to her young age.
Motherhood took an unexpected form, but Melanie embraced every moment with gratitude. Nasal squamous cell carcinoma altered her body, but she is focused on regaining strength and adjusting to her new normal. Regular check-ups and hyperbaric oxygen therapy support her ongoing healing. Though life will be different, Melanie remains hopeful, emphasizing that even in the darkest moments, happiness can be found. Her experience underscores the importance of mental health support, a strong community, and finding purpose beyond the diagnosis.
Name: Melanie S.
Diagnosis:
Nasal Squamous Cell Carcinoma
Staging:
Stage 4
Mutation:
p16 positive (HPV-related)
Symptoms:
Nosebleeds
Sinus pressure
Congestion
Eye protrusion
Treatments:
Chemotherapy
Surgeries: orbital exenteration (left eye removal) & reconstructive flap surgery
Symptoms: Sore on the tongue, which caused pain during eating and speaking; changes in the color and texture of the tissue where the sore was located Treatments: Surgery (partial glossectomy, radical neck dissection, reconstruction), radiation ...
Why Getting a Second Opinion Changed Joel’s Grade 2 Myxofibrosarcoma Treatment Plan
Joel has always valued family, faith, and community. Married for 31 years with a daughter and several foster children, he never imagined cancer would be part of his life. However, in a life-changing moment, in December 2024, at age 57, he was diagnosed with a grade 2 myxofibrosarcoma, a rare soft tissue cancer.
A small lump on his shin seemed minor at first, and he initially dismissed it as a fatty growth. However, over several months, it grew larger, prompting him to visit his doctor. As a precaution, though the doctor believed it was likely benign, they ordered tests to rule out any serious issues. An ultrasound came back inconclusive, leading to an MRI, which heightened concerns. Seeking a second opinion, Joel consulted a friend who connected him with a sarcoma specialist at the University of Iowa. Within hours, Joel received a call confirming that he had myxofibrosarcoma.
The uncertainty of his diagnosis was overwhelming. Not knowing whether he had months or years left to live was a heavy burden. However, after a biopsy confirmed it was grade 2 myxofibrosarcoma and contained, he felt a sense of relief. His doctor reassured him that they could treat his condition and manage it if it recurred.
Joel’s grade 2 myxofibrosarcoma treatment plan consists of radiation therapy, which he undergoes daily for a few minutes. Though he hasn’t experienced significant side effects yet, doctors have advised him that he may develop skin irritation in later weeks. After radiation, surgeons will remove the tumor and perform a skin graft and muscle repositioning to help the area heal properly.
Despite these medical interventions, Joel remains physically strong, continuing his workouts and daily routine without pain. Emotionally, Joel finds strength in his faith, family, and supportive community. His wife has been his rock and his close-knit group of friends offers him unwavering encouragement. His belief in God provides reassurance, removing the fear of death and allowing him to focus on living fully.
Beyond his experience with grade 2 myxofibrosarcoma, Joel emphasizes the importance of seeking medical advice early, especially for men who often downplay health concerns. He considers how his initial reluctance to get checked could have caused worse outcomes. Now, he encourages others to listen to their bodies and take proactive steps.
His outlook on life has shifted, centering on gratitude and using his experience to uplift others. He firmly believes in leveraging crises to bring awareness, comfort, and inspiration to those in need, rather than letting them go to waste. Instead of letting cancer define him, Joel is choosing to make a difference, reminding others that hope and purpose can thrive even in the face of adversity.
Name:
Joel S.
Age at Diagnosis:
57
Diagnosis:
Myxofibrosarcoma
Grade:
Grade 2
Symptom:
Lump on shin (gradual growth over several months)
Treatments:
Radiation therapy
Surgery: tumor removal & reconstruction of affected area
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider to make treatment decisions.
Symptoms: Pain behind left knee, needle-like sensation in left foot Treatments: Surgery to remove what was thought to be benign tumor, chemotherapy, final surgery, radiation (36 sessions) ...
Navigating Waldenström’s: Getting the Best Care Close to Home
Unlock Better Waldenström’s Care – Right in Your Community!
Waldenström macroglobulinemia (WM) patient advocate Pete DeNardis, expert hematologist Dr. Hussam Eltoukhy, and practice administrator Maria Lamantia discuss the latest in community-based cancer care, personalized treatment options, and effective communication strategies.
Whether you’re newly diagnosed with WM or managing ongoing treatment, learn how to optimize your care, navigate “watch and wait,” and access clinical trials without leaving your local support network.
Navigating Waldenströms: Getting the Best Care Close to Home
Hosted by The Patient Story
Join WM patient advocate Pete DeNardis and expert hematologist Dr. Hussam Eltoukhy as they discuss the latest in community-based cancer care, personalized treatment options, and effective communication strategies.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Thank you to Pharmacyclics, an AbbVie company, for its support of our patient education program. The Patient Story retains full editorial control over all content.
Stephanie Chuang: We know most Americans are getting their cancer care at their local hospital or clinic and not at the large academic institutions, maybe not regularly or not even at all. But you may also hear that for blood cancers like Waldenström’s, it’s important to see a specialist. What does this mean and how can patients and their care partners successfully get the best care?
I’m the founder of The Patient Story. I was diagnosed with a different kind of non-Hodgkin lymphoma, diffuse large B-cell lymphoma. When I was getting my 600-plus hours of chemoimmunotherapy, the idea came up: how can we help cancer patients and care partners navigate life at and after diagnosis? That’s what The Patient Story focuses on.
The LLS offers free resources like its Information Specialists, who are one free call away for support in different areas of blood cancer. The IWMF offers many support resources specifically for the Waldenström’s community, including dozens of in-person support groups around the world in addition to so many that are happening online.
We also want to thank our sponsor, Pharmacyclics, an AbbVie company, for its support, which truly helps us to host more of these programs for free to our audience. I want to stress that The Patient Story retains full editorial control over all content as always. While we hope that this is helpful, keep in mind this is not a substitute for medical advice, so still consult with your own team about your decisions.
This is sure to be an incredible discussion led by friend of The Patient Story and long-time advocate with the IWMF, Pete DeNardis.
Pete DeNardis: I’m chair emeritus of the International Waldenström’s Macroglobulinemia Foundation and a long-time volunteer for the organization. I’m a patient myself, was diagnosed in October 2003, and have had multiple periods of treatment and watch-and-wait status over the years. My treatment has included chemotherapy, radiation, monoclonal antibodies, and targeted therapies. Most recently, my WM has been behaving itself.
I live in Pennsylvania and my care is directed by a hematologist at a cancer teaching hospital. Over the years, I have had overnight stays in a university-based hospital and at local community hospitals in emergency situations. I will be joined by Dr. Hussam Eltoukhy and Maria Lamantia.
Dr. Hussam Eltoukhy: I’m a clinical assistant professor with RWJBarnabas Health and the Rutgers Cancer Institute of New Jersey. I’m a hematologist specializing in blood cancers.
My role is interesting. I work out of a community-based setting but in close partnership with our academic center, the Rutgers Cancer Institute, which gives me a very different perspective on treating patients. I have many patients with Waldenström’s and other conditions, and I’m thankful to be here to talk more about that.
Maria Lamantia: I’m so happy to work alongside Dr. Eltoukhy. We work together as a team. We have a wonderful staff and we treat our patients like family. Working alongside Dr. Eltoukhy, I see him take the time with his patients to answer all of their questions. We treat them emotionally and physically, so we need to treat them as a whole.
Pete: That’s fantastic. Patients need to have a good relationship with their healthcare professionals, especially for people with rare cancers like Waldenström’s, and to have a very caring and a very productive relationship. It sounds like you’re doing a fantastic job.
The Most Common First Symptoms of Waldenström’s
Pete: We want to get your perspective on how you approach Waldenström’s patients. Dr. Eltoukhy, can you describe the typical diagnostic journey for a patient with WM? What are the initial symptoms you usually see? Do you run certain tests when a patient comes in?
Dr. Eltoukhy: The diagnostic journey for a patient with Waldenström’s often can be prolonged because the initial symptoms are quite nonspecific and can mimic other conditions. The most common symptoms patients report are fatigue and weakness, which are most often due to anemia. Some patients may also experience unintentional weight loss, night sweats, and peripheral neuropathy, which presents as numbness or tingling in the hands and feet. In more advanced cases, symptoms related to hyperviscosity, like headaches, blurred vision, dizziness, or even nosebleeds may develop.
Common Steps to Diagnose Waldenström’s
Dr. Eltoukhy: The diagnostic approach typically starts with a thorough history and physical exam, which is critical for identifying patterns of symptoms and any physical signs, like enlarged lymph nodes or spleen. From there, blood tests are usually the first step. A complete blood count might show anemia and serum protein electrophoresis can detect a monoclonal IgM protein, which is characteristic of Waldenström’s. Further testing with immunofixation and serum viscosity levels can provide more details.
Once Waldenström’s is suspected, a bone marrow biopsy is essential to confirm the diagnosis. It will show the infiltration of lymphoplasmacytic cells. The bone marrow can be tested for other things, like the MYD88 mutation, which is present in over 90% of Waldenström’s cases. Imaging studies like CT scans can be useful in assessing lymph node or organ involvement.
Diagnosing Waldenström’s requires piecing together clinical signs, lab results, and histologic findings. Because the symptoms can be subtle or overlap with other conditions, taking a comprehensive history and performing a thorough physical exam is foundational in guiding the diagnostic workup.
How to Communicate with Your Primary Care Physician the Need to See a Specialist
Pete: I can tell by your response that you have a lot of experience with Waldenström’s patients. You’re hitting all the high notes and the critical aspects of diagnosing someone with Waldenström’s. Sometimes the symptoms manifest over a longer time.
I had classic symptoms, but I didn’t realize it then. I kept on thinking it was something else and waited a long time before I saw my doctor. How can a patient best communicate their concerns to their primary care physician to ensure a timely referral to a specialist? How do we get people to understand that we should take this to the next level in terms of testing and analysis of what’s going on?
If something feels off… it’s crucial to report these symptoms accurately and thoroughly.
Dr. Hussam Eltoukhy
Dr. Eltoukhy: Interestingly, that happens a lot. When it comes to ensuring a timely referral to a specialist, one of the most important things patients can do is to be clear and proactive in communicating their concerns. First and foremost, patients should be their own advocates. If something feels off — like you’re having persistent fatigue, unexplained weight loss, night sweats, or any unusual symptoms such as numbness or frequent infections — it’s crucial to report these symptoms accurately and thoroughly. Even if the symptoms seem minor or unrelated, sharing the full picture helps the physician connect the dots.
It’s also helpful for patients to record their symptoms: noting when they started, how often they occur, and whether they’re getting worse over time. This level of detail provides valuable context that can prompt a physician to dig deeper and consider a hematologic cause like Waldenström’s.
In addition, there should be no hesitation to express concerns directly. If they feel their symptoms are not improving or are being overlooked, it’s perfectly appropriate to ask, “Could this be something more serious? Do you think I should see a specialist?” Open and honest communication ensures the primary care physician fully understands the patient’s level of concern and can make an informed decision about referring them to a hematologist. Ultimately, while I know that physicians play a key role in guiding care, patients who actively engage in the process and advocate for themselves help ensure timely, appropriate evaluations.
Deciding Whether to Go to an Academic/Research Center or Community Hospital
Pete: In many cases, an important aspect of receiving treatment is where you get treatment. Of course, what determines that could be where you’re located and what type of services are available to you. This brings up the conversation of cancer care in a community setting or a suburban/rural setting. What’s the difference between a community hospital versus an academic center or a cancer hospital? How can people best understand the difference between them? If it does make a difference, how do they know which one to go to?
Dr. Eltoukhy: When we talk about cancer care in general, especially for rare diseases like Waldenström’s, the setting where a patient receives treatment can be as important as the treatment itself. Broadly speaking, there are key differences between community hospitals and academic medical centers or more specialized cancer centers.
By design, community hospitals are designed to provide general health care services to the local population. They offer a wide range of medical care, from routine checkups to managing common conditions and even some cancers. The care teams in these settings are skilled at treating a broad spectrum of diseases. For patients with more common or straightforward cases, community hospitals are convenient and provide excellent care close to home. Accessibility is a big advantage because patients don’t have to travel far. They also often have a more personalized relationship with their care team.
On the other hand, academic medical centers and specialized cancer hospitals focus heavily on research, teaching, and clinical trials, so these centers are often affiliated with medical schools and are involved in clinical trials, so they’re at the forefront of new treatments and therapies. Patients treated at these centers may have access to novel therapies that aren’t widely available in the community setting. Additionally, these institutions have multidisciplinary teams, which include hematologists, pathologists, and other specialists who focus specifically on rare cancers providing a more specialized approach.
In terms of the patient population, your typical community hospital will manage more common cancers and straightforward cases, while academic centers are more in tune to see more complex, rare, or treatment-resistant cases. However, this does not mean that community hospitals cannot manage diseases like Waldenström’s effectively. Many do, such as ours, especially with proper collaboration and referral pathways.
Ultimately, the best approach may involve a balance between the two settings. Patients might receive specialized consultation at an academic center while continuing their routine care and follow-ups in the community, ensuring both accessibility and cutting-edge treatment options.
Stephanie: Dr. Eltoukhy, I want to jump in very quickly as we have two patient perspectives about how they were able to figure out the best Waldenström’s care for themselves. Annmarie was diagnosed a few years ago and heard right away to see a specialist. Bob, on the other hand, was diagnosed in 1997, which was a very different time, and says the IWMF was instrumental in helping him link between a local care team and a specialist. Bob, what was it like trying to figure out your care almost three decades ago?
Bob B.: First of all, my local oncologist didn’t know about how I should be treated. With IWMF, we were able to get Arnie’s advice. There was some research going on at Scripps, MD Anderson, Lombardi Comprehensive Cancer Center, Mayo Clinic, and a couple of others. We visited a few places to go through the discovery of what might seem to make the most sense to be treated, bring that information back to my local oncologist, and allow him to be my quarterback.
Annmarie S.: If you’re lucky enough to go to a place with specialized care, that’s crucial in terms of them understanding the disease, diagnosis, different treatments, what future treatments can look like, research, and all the positivity that comes along with that. What’s challenging with Waldenström’s is general practitioners and hematologists don’t understand what it’s all about in terms of care and the next level of getting treatment, so they look at it more broadly as a cancer.
When you go to the next level and get a Waldenström’s specialist, they treat it more as disease management if you will. A lot of times, people cannot do that. Sometimes people are comfortable with the practitioner that they have. Utilize a facility that treats Waldenström’s and if you have to use your primary care physician or a general hematologist, have a Waldenström’s team as part of your overall treatment plan.
The Biggest Challenge for Waldenström’s Patients Who Get Community Care
Pete: In my situation, I go to a local university-based hospital because it’s as convenient as going to a community hospital. My condition is a little unusual even among rare cancer patients. What would you consider is the biggest challenge to providing cancer care in a local community setting, like in a rural setting?
Dr. Eltoukhy: One of the biggest challenges in providing cancer care in the local community setting comes down to the availability of resources. It’s not about the knowledge or expertise. We have highly skilled specialists dedicated to treating complex conditions like Waldenström’s. The challenge lies more in the infrastructure and support systems compared to larger cancer centers.
For example, while I can offer phase 2 and 3 clinical trials in my community practice, phase 1 trials, which are often the first step in introducing new therapies, typically require more specialized resources and are more readily available at larger academic or dedicated cancer centers. This includes specialized monitoring, regulatory oversight, and more intensive support systems.
Another significant factor is personnel. Larger cancer centers tend to have extensive multidisciplinary teams with dedicated staff for clinical trials, patient navigation, and supportive care services. In the community setting, we operate with leaner teams, so it can be more challenging to coordinate the logistics of complex care or get patients enrolled in trials as quickly as we’d like.
One of the biggest challenges in providing cancer care in the local community setting comes down to the availability of resources… It’s not that care is any less thorough, but the resources to streamline and support those processes are more limited.
Dr. Hussam Eltoukhy
It’s not that care is any less thorough, but the resources to streamline and support those processes are more limited. That said, working closely with the cancer center, as I do, helps bridge some of those gaps. We can offer high-quality, specialized care locally while collaborating with larger institutions to ensure patients have access to the full spectrum of treatment options when needed. The goal is always to deliver the best possible care, whether it’s in the community or at a specialized center.
Pete: That’s great. I like how you touched on clinical trials. We try to encourage patients in the Waldenström’s macroglobulinemia community to seek out clinical trials whenever they can. It’s good to know that even in a community hospital setting, patients can participate in a clinical trial.
Referring Waldenström’s Patients to an Academic Center
Pete: From a community setting, collaboration is important with larger hospitals when the need arises. Are there circumstances where you refer your patients to a larger center or to another hospital setting where there are more people with more extensive knowledge or more facilities that can tend to their particular circumstances?
Dr. Eltoukhy: Yes. As a blood cancer specialist practicing in a community setting, I feel fully confident managing a wide range of hematological malignancies, including Waldenström’s. My knowledge and expertise are not limiting factors when it comes to providing high-quality care for these patients. However, collaboration with our main cancer center and other academic institutions is vital to ensuring patients have access to the full spectrum of treatment options when needed.
Typically, there are two main circumstances where I would refer a patient to a larger center. The first is when additional resources or specialized support are necessary. For example, if there’s a clinical trial, particularly an early phase trial, that could offer a promising new therapy not available in our community setting, I would absolutely refer a patient to take advantage of that opportunity. While we do offer phase 2 and 3 trials locally, phase 1 trials are very specialized research protocols usually housed in these larger academic centers with the infrastructure to support them.
The second scenario involves treatments that require specialized procedures we don’t currently offer at our center. While this isn’t specific to Waldenström’s, right now, therapies like bone marrow transplants or CAR T-cell therapy are examples of advanced treatments that require more dedicated facilities and more specialized teams with highly specific protocols. These are scenarios where I would refer to the academic center.
Referrals are part of a collaborative approach… This partnership allows patients to receive cutting-edge treatments without losing the personalized, accessible care they value in the community.
Dr. Hussam Eltoukhy
That said, these referrals are part of a collaborative approach, so even when a patient is referred out for a specific treatment or trial, I remain closely involved in their care, coordinating with the academic center to ensure a smooth transition and continuity of care when they return to the community setting for a follow-up. This partnership allows patients to receive cutting-edge treatments without losing the personalized, accessible care they value in the community.
Referring Waldenström’s Patients to Another Specialist for a Second Opinion
Pete: In line with that, the IWMF provides a list of several dozens of doctors who are considered second-opinion doctors because perhaps they work at an institution that focuses solely on Waldenström’s, like Dana-Farber Cancer Institute or Mayo Clinic. Have you ever referred a patient for a second opinion because their situation is so unusual? And is that a common practice?
Dr. Eltoukhy: Yes, that is. Typically in the community, a lot of oncologists would be what we consider generalists, which means they treat a lot of different conditions. The referral basis for these doctors would be a lot more than me. Being a blood cancer specialist, while I don’t do it as often as I would if I was a generalist, I absolutely do on a regular basis. These come back to the patients who are treatment-resistant or unusual cases when we send out pathology and the pathology comes back blurring the lines between two different diseases, which happens quite often in blood cancers.
In our center at least, I collaborate very closely with the Rutgers Cancer Institute. We have combined tumor boards and I will refer patients. For most patients, first-line treatment will be the standard of care. No matter where you go, there’s somewhat of an agreement about what the standard of care would be.
Once you get to the second, third, fourth, fifth, and so on lines of treatment, that’s when I in the community setting or other doctors in an academic center usually go to other colleagues to get their opinion. Seeing me in the community doesn’t mean you don’t get the opinions of the other doctors in the academic center. I’m always presenting on these two boards, sharing the cases, and getting other doctors opinions. This shouldn’t be an ego thing. It’s more about giving the best care possible to the patients.
Pete: I can tell by your responses that you obviously are a doctor who has the needs and the health of the patient as the number one priority and I commend you for that.
What Waldenström’s Patients Should Consider in Choosing a Community Hospital or Provider
Pete: For patients who don’t require specialized care, can you describe how going to a community hospital could be in their best interest and benefit them?
Dr. Eltoukhy: There is a common misconception that community cancer care isn’t as high quality as what you’d find at a larger academic center, but that’s simply not true. For many patients who don’t require highly specialized treatments, receiving care in a community setting can offer distinct advantages without compromising the quality of care.
First and foremost, being treated closer to home means patients are in a familiar environment surrounded by their support system, such as family, friends, and their local community. That comfort can play a huge role in how patients cope with a cancer diagnosis and treatment. It feels like you’re in your own backyard, which can make the entire experience less overwhelming. But it’s not just about convenience.
Our community cancer center is equipped with a multidisciplinary team, which is essential for providing comprehensive care. We have radiation oncologists, surgical oncologists, pathologists, radiologists, and medical hematologist-oncologists all working together. We regularly hold tumor boards where complex cases are discussed collaboratively, ensuring that multiple expert opinions shape each patient’s care plan.
For disease sites where we may not have a dedicated tumor board locally, we seamlessly collaborate with our main cancer center to ensure every patient benefits from the collective expertise. Even though patients are receiving care in a local familiar setting, they’re still getting the benefit of a specialized collaborative treatment. It’s not one doctor in isolation. It’s a coordinated team effort to provide the best possible outcomes. For many patients, this combination of high-quality care and the comfort of being treated closer to home is honestly the ideal scenario.
Maria: We offer also procedures in the clinic setting for those who are a little frightened to be in a hospital setting, like bone marrow biopsies. We have very skilled, qualified staff to assist Dr. Eltoukhy and we’re able to do those right in an office setting, which is helpful for patients who have that fear of going to the hospital.
We’re conveniently located right on the same campus as the Community Medical Center, so knowing that the hospital is close by is very comforting and convenient for our patients. The building that we’re in is comprised of oncology-based physicians, so it’s a one-stop shop as well and all of the doctors collaborate with Dr. Eltoukhy.
Pete: It’s great. That does sound like you have an ideal environment.
Financial Benefit of Going to a Community Provider
Pete: No offense, but people tend to think less of a community-based hospital when you’re providing the same quality of care as if they went directly to a university-based hospital. But then on the flip side, is there a cost savings for the patient for going the community-based hospital route? They’re getting the same standard of care, but is it more affordable for certain patients to do that?
Dr. Eltoukhy: I do think so. Care at a community hospital can be often more affordable and accessible for patients and that’s an important factor when considering treatment options. One of the biggest advantages is the reduced financial burden related to travel and lodging. When patients are treated closer to home, they don’t have to worry about the added expense of traveling long distances, taking extended time off work, or even arranging accommodations closer to a larger academic center. This alone can make a significant difference, especially for patients undergoing long-term treatments, such as patients who have Waldenström’s.
From a healthcare cost perspective, community hospitals can also offer more cost-effective care without compromising quality. Administrative and operational costs tend to be lower in the community setting and that can translate into lower out-of-pocket expenses for patients. Additionally, treatments and services provided locally often come with fewer facility fees compared to larger institutions.
Another important factor to consider is insurance coverage. Community hospitals are typically well-integrated with the local insurance networks, which makes it easier for patients to access care that is covered under their plan. This can help minimize unexpected medical bills or any out-of-network charges that might arise when seeking treatment at larger, more specialized centers.
From a healthcare cost perspective, community hospitals can also offer more cost-effective care without compromising quality.
Dr. Hussam Eltoukhy
Ultimately, by offering high-quality comprehensive care in a local setting, community hospitals provide patients with financial and logistical advantages, and this accessibility ensures that patients can focus on their treatment and recovery without the added extra stress of significant financial strain.
Pete: I was having significant issues early on. Because of my insurance and health situation, I had to decide whether I should go out of state for the next level of care to resolve my issues at the time. Fortunately, what’s in place is if it becomes serious enough, you have a very good support network in your local community hospital, but you can reach out for a second opinion to centers of excellence and that’s important for people to understand. You don’t have to travel, especially if you can’t do it physically because of your health situation. The resources are there. You just have to work with your medical staff and coordinate that.
Monitoring Waldenström’s Patients on Watch and Wait
Pete: From your perspective and your experience, what are key considerations in monitoring disease activity for patients who are on a watch-and-wait status? How often do you follow up with them? What do you typically do in your practice?
Dr. Eltoukhy: For patients with Waldenström’s who are on a watch-and-wait approach, regular monitoring is essential. This strategy is common because many patients are asymptomatic at diagnosis or have very slowly progressive disease. This disease usually doesn’t require immediate treatment. However, just because treatment isn’t starting right away doesn’t mean the disease isn’t being closely managed.
In my practice, follow-up appointments typically occur every three to six months, depending on the patient’s specific situation and how stable their condition is. During these visits, we focus on clinical assessments and laboratory monitoring. We look at hemoglobin levels to monitor for anemia. We monitor IgM levels to track monoclonal protein. We check serum viscosity if there are any symptoms suggestive of hyperviscosity.
We also check kidney function, calcium levels, and assess for any signs of organ involvement. A thorough physical exam is equally important. I look for signs like enlarged lymph nodes, enlarged spleen, enlarged liver, and ask about any new or worsening symptoms, like fatigue, night sweats, weight loss, neuropathy, or changes in vision that could signal disease progression.
Key signs that might indicate a need to move from watchful waiting to active treatment usually include worsening anemia, symptomatic hyperviscosity, significant weight loss, fevers, night sweats, organ enlargement, or the development of any kind of neuropathy that would affect your daily life. If any of these arise, we reassess and discuss the treatment options.
In addition to monitoring, I always like to emphasize the importance of maintaining a healthy lifestyle. Staying active, eating a balanced, healthy, and whole foods diet, and managing other health conditions, like high blood pressure or diabetes, can improve overall well-being and help patients feel more in control of their health.
Emotional support is also very important as living with chronic conditions like Waldenström’s, even in a watch-and-wait phase, can be stressful. Regular follow-ups not only track disease activity but also provide reassurance and a structured plan for managing the condition over time.
The watch-and-wait approach is not about doing nothing. It’s more of a proactive strategy based on solid data and extensive clinical experience.
Dr. Hussam Eltoukhy
Pete: Could you talk a little bit more about the emotional and psychological challenges in that aspect? How do you help a patient navigate through that part of having the disease?
Dr. Eltoukhy: Living with a chronic condition like Waldenström’s, especially under our watch-and-wait approach, can be emotionally challenging for many patients. There’s this uncertainty of knowing you have a cancer diagnosis but not needing immediate treatment. Many patients will relay that it creates a lot of anxiety and stress. It’s completely natural to feel this way, but there are several strategies that we try to do to help patients cope with this.
I try to emphasize that it’s important to remember that the watch-and-wait approach is not about doing nothing. It’s more of a proactive strategy based on solid data and extensive clinical experience. If we recommend monitoring rather than immediate treatment, it’s because we know from research and patient outcomes that this is the safest and most effective approach for certain cases. Sometimes, if you explain it to them this way, it can help alleviate some of this uncertainty and fear.
That said, managing the emotional side of this journey is as important. Stress management techniques like mindfulness meditation and deep breathing exercises can help reduce day-to-day anxiety. Regular physical activity is also excellent, even doing something as simple as walking, which I always advocate for my patients. If you ask any of my patients, I tell them, “Do you track your steps daily? If not, you should start tracking and start increasing.”
Start with small goals and try to work your way up. If you can get that to 10,000 steps, great, but start somewhere, even if it’s at a lower number. Increasing physical activity can have a profound impact on mental health by improving mood and reducing stress. I’ve seen it with my patients. I’ve had patients who have done this and say their energy level has increased.
By focusing on physical health and emotional well-being, patients can live full, active lives while feeling confident that their condition is being closely monitored.
Dr. Hussam Eltoukhy
Support groups are also important. They can be very valuable whether they’re in person or online. Connecting with others who are going through the same experience can provide a sense of community and shared understanding. It helps to know that you’re not alone in navigating these emotional ups and downs. Counseling or speaking with a mental health professional can also be very helpful. They can provide tools to manage anxiety and cope with uncertainty.
It’s very important to emphasize to patients the importance of staying connected with their loved ones. Family and friends can be an essential support system, offering emotional comfort and practical help when needed. Maintaining a positive outlook doesn’t mean ignoring the challenges but trying to focus on what’s in your control. Staying active, attending regular follow-ups, and trying to lead a fulfilling life despite having a diagnosis.
Ultimately, while the watch-and-wait approach can feel uncertain, it’s grounded in strong evidence and a deep understanding of the way Waldenström’s progresses and acts. By focusing on physical health and emotional well-being, patients can live full, active lives while feeling confident that their condition is being closely monitored. At RWJBarnabas, we offer many support groups and have a regular monthly calendar that we offer to patients.
Maria: As the supportive team to the provider and the patient, we do our best so that the patient doesn’t have to worry about anything as far as authorizations or appointments. We educate them on all of that because those can be also very stressful for them. We try to take all of that away from them so they can focus on their health.
However, we also use the resources that are on campus. There are plenty of groups, like Dr. Eltoukhy said. We also have resources that include dietary and social work that we can refer these patients to and support them.
The staff here is kind and empathetic and treats patients like family. They know that they can call us if they’re scared and we don’t rush them. They know if something happens or they’re having a little symptom in between, they can call, they will receive a callback, and we will take the time to listen and report it to Dr. Eltoukhy, who will then follow up. They know that even though there is a bit of a wait, they can reach out to us at any time.
We do our best so that the patient doesn’t have to worry about anything… so they can focus on their health.
Maria Lamantia
Pete: That’s great. Thank you to both of you. You touched on many aspects, much more than I even anticipated. Your advice is very sound and your practice is amazing and commendable. I know from personal experience that a lot of the things that you mentioned are important in helping a patient navigate through not only the physical health aspects but also the mental health aspects of dealing with the disease and living with a chronic illness.
I go to my local hospital. I take notice of what services they provide and if they have any special programs coming up, I take advantage of them. I’m deeply involved in volunteering for the IWMF, but they help me immensely. It’s always important whatever cancer you have to try and get together with patients who have similar cancers to learn from each other and share stories. There’s a healing aspect in sharing and understanding what someone else has gone through and the IWMF provides that capability.
The IWMF has support groups and affiliates all around the world that help patients. We have a weekly newsletter, online discussion groups, webinars, and an annual education forum. We answer any questions patients, their caregivers, or their family members may have at any point in time.
I encourage people to visit IWMF.com and check out their services. It’s an extra level of care that you can get besides what you’re getting from a very caring hematologist-oncologist and a very caring staff who works with them. I can’t speak highly enough of the very qualified medical community and medical staff and the IWMF. When you put those two together, you’re in very good hands.
How Waldenström’s Patients Should Talk to Their Healthcare Team About Their Symptoms
Pete: Another thing that comes up, especially when you’re dealing with a disease that is chronic and you’re in a watch-and-wait period, is odd manifestations that you think is the disease. How should a patient communicate those symptoms? Should they say something or not say something? What’s your advice for communicating any symptoms to their healthcare team?
Dr. Eltoukhy: Effective communication with your healthcare team is crucial when managing a condition like Waldenström’s, especially if you’re on a watch-and-wait approach. One of the most important things patients can do is to promptly report any new or worsening symptoms. You don’t have to wait for your next scheduled appointment, whether it’s in three or six months. I end every single visit with my patients by telling them that if anything comes up before the next appointment, they should call and come in. I don’t say that to fill in the gaps. I tell the patients over and over again, “Do not wait. Come in.”
Effective communication with your healthcare team is crucial when managing a condition like Waldenström’s.
Dr. Hussam Eltoukhy
It’s important for patients to understand that and to know that they can reach out to their doctor. You don’t have to wait. You’re not bothering anyone. We want you to do that. We want you to come in. I want to know if anything is going on because we want to catch some of these symptoms like hyperviscosity very early. Don’t wait. Call your team. If you can’t see the doctor, see one of their colleagues or their nurse practitioner. If something feels different or concerning, reach out right away. That’s what we’re here for.
Keeping a symptom diary can be a very helpful tool. By tracking how you feel on a daily or weekly basis, you can start to identify patterns or changes over time that might not be obvious at the moment. Note things like fatigue levels, changes in weight, night sweats, any new pains anywhere, or any new neurological symptoms like numbness or tingling. Detailed information can give your doctor and the rest of your team a clearer picture of what’s happening and can help guide decisions about whether it’s time to adjust your plan.
Listening to your body and trusting your instincts is also key. No one knows your body better than you. If your gut is telling you that something isn’t right, whether it’s a new symptom or a shift in how you’re feeling overall, it’s important to speak up. You’re not bothering anybody. No one’s going to think otherwise.
Your healthcare team is your partner on this journey. Open and ongoing communication ensures that we can address concerns early and adjust care as needed.
Dr. Hussam Eltoukhy
What’s the worst-case scenario? It wasn’t caused by Waldenström’s. As a patient, don’t think anything of it. We want you to tell us all the new symptoms. We want to know what’s going on because we’re here to help the patient.
Sometimes, subtle changes can signal that it’s time to reassess and take a different plan. If you were on the cusp of considering treatment, maybe it’s time to consider it or not consider it. Remember that your healthcare team is your partner on this journey. Open and ongoing communication ensures that we can address concerns early and adjust care as needed. Once again, don’t hesitate to reach out. This is why we’re here. We’re here to support you every step of the way.
Clinical Trials for Waldenström’s Patients
Pete: You mentioned that even in the community hospital setting, you participate in clinical trials. Are clinical trials being conducted in your setting? What kind of trials do you have your patients participating in?
Dr. Eltoukhy: Across all cancers, we currently have over 60 clinical trials available at our community cancer center, including many for hematologic malignancies. We offer phase 2 and phase 3 clinical trials. We’re not able to offer phase 1 clinical trials at this time.
Offering clinical trials in a community setting is a great way to provide patients with access to cutting-edge treatment without requiring them to travel to larger academic centers. When determining the feasibility of conducting trials in our center, one of the biggest considerations that we look at is resources. It’s not just about having the physical space or the equipment. We need to ensure that we have the right personnel and infrastructure in place to manage trials safely and effectively. This includes dedicated research coordinators, nurses, pharmacists, and regulatory staff who are trained in clinical trial protocols and patient safety.
Our goal is to offer trials that are not only scientifically valuable but also feasible and safe to administer in the community setting.
Dr. Hussam Eltoukhy
Clinical trials in the US are very heavily regulated and rightfully so. There are strict guidelines and oversight to ensure that every trial is conducted ethically, that patient safety is the top priority, and that data is collected accurately. We have to assess whether we can meet all those requirements from patient monitoring to data reporting while maintaining the highest standard of care.
Ultimately, our goal is to offer trials that are not only scientifically valuable but also feasible and safe to administer in the community setting. We want to make sure patients have access to innovative treatments while receiving the same level of care and oversight that they would expect from one of these larger academic centers.
Different Phases of Clinical Trials
Pete: For those who aren’t as knowledgeable about clinical trials, can you do a quick overview of the different phases of clinical trials?
Dr. Eltoukhy: Phase 1 is when a new drug starts to be administered. Once you move on to phase 2, you have already determined the safety of the drug and you’re starting to look at efficacy and how it could work. Once you move on to phase 3, you have a better understanding of how well it works and how safe it is, and you’re looking at a broader approach and getting the real data on efficacy and how well it works.
A phase 4 clinical trial is always ongoing. Any drug that’s out there is always being monitored to make sure that it continues to be safe because safety doesn’t end after phase 1 or phase 2. Safety is ongoing. In phase 1, they’re new drugs that need very close monitoring and you could have unexpected side effects. We don’t quite partake in phase 1 trials right now, but we have many phase 2 and phase 3 trials.
Busting Clinical Trial Myths
Pete: In a community clinical team, what can you do to ensure patients will learn about clinical trial options and whether they should be concerned about the potential side effects of being in a clinical trial? Am I going to be worse off by doing that or not? How do you educate them? How do they find out about the clinical trials?
Dr. Eltoukhy: That’s a very common concern. Ensuring patients learn about and understand clinical trial options starts with the clinical team, especially the physician. Physicians should take an active role in discussing these opportunities directly with the patients.
When I open a clinical trial at our community center, it’s because I believe it has the potential to benefit the patients. But offering a trial isn’t enough. We have to make sure that patients understand, are fully informed, and are comfortable with their options. For me, that means sitting down with each patient and having an open, honest conversation.
The right choice for one patient isn’t necessarily the best for another patient. It’s essential to personalize the discussion based on the patient’s health status, personal preferences, and lifestyle.
Dr. Hussam Eltoukhy
I explain what we can offer under the standard of care, what treatments are currently approved and routinely used, and lay out what the clinical trials could provide. I go through the potential benefits, the goals of the study, and also any limitations or uncertainties. Patients must understand not just the possibilities but also the risks and the level of commitment involved.
One of the most critical aspects of these conversations is avoiding bias. My role isn’t to push a patient toward one option or another but to provide them with all the necessary information to make an educated, confident decision. What might be the right choice for one patient isn’t necessarily the best for another patient. It’s essential to personalize the discussion based on the patient’s health status, personal preferences, and lifestyle.
Ultimately, patients should feel empowered to choose the path that’s best for them, whether that’s enrolling in a clinical trial or sticking with the standard of care. By fostering clear, transparent communication, we try to help patients navigate their options and ensure that they’re making decisions that align with their goals and values.
Our goal is to offer as many trial opportunities as we can in our setting but also to recognize when a referral is necessary for something more specialized.
Dr. Hussam Eltoukhy
Bringing Waldenström’s Clinical Trials to the Community Cancer Care Site
Pete: From a perspective of trying to make sure that your patients are aware of these clinical trials and wanting them to take advantage of them if it’s in their best interest, how do you ensure that they have access to the latest trials? How does it work for your hospital system to get involved in a clinical trial, especially for Waldenström’s patients? Do you seek them out yourself or are you approached by the people who are running the trial? How does the process work?
Dr. Eltoukhy: We recognize the importance of staying connected with larger academic centers that may offer these opportunities. A lot of times, we will open trials collaboratively with the Rutgers Cancer Institute. One of the key roles of community medical centers is to understand where we fit within the broader healthcare system. It’s not a one-size-fits-all approach. We need to be very clear about what we can effectively manage in our setting and when it’s in the patient’s best interest to refer them to an academic center for a clinical trial or more specialized treatment.
Once again, it’s not about limitations in expertise. It’s about ensuring patients receive the best possible care whether that’s locally or through a specialized trial at an academic center. Of course, whenever possible, we want to provide that care closer to home. It’s more comfortable, more cost-effective, and less burdensome. Traveling long distances to participate in a clinical trial can be incredibly challenging, especially when dealing with the physical and emotional toll of cancer care.
High-quality cancer care isn’t limited to large academic centers. Community hospitals like ours play a vital role in delivering comprehensive, patient-centered care that’s accessible, effective, and personalized.
Dr. Hussam Eltoukhy
Our goal is to offer as many trial opportunities as we can in our setting but also to recognize when a referral is necessary for something more specialized. Effective collaboration means maintaining strong communication with the academic center, letting them know what trials we have open, what we can manage, and as importantly, what we can’t. By advocating for our patients and fostering these partnerships, we’ve been able to create a seamless system where patients benefit from the convenience of local care and innovations of cutting-edge research when needed. It’s about working together to make sure patients have access to the best options, wherever they may be.
Pete: The IWMF, through the efforts of Dr. Jorge Castillo at Dana-Farber, has established the WM-NET, which is designed to become a network of hospitals across the United States that will participate collectively in clinical trials and have them at their sites. Not all of the participating organizations are going to do all of the trials, but they will try and distribute it more broadly to make it easier for patients to get access to these trials locally rather than having to travel to a major cancer center.
Final Takeaways
Pete: Thank you, Dr. Eltoukhy and Maria, for your time and perspective on providing care to Waldenström’s patients in your hospital setting and community-based hospitals. Do you have any final remarks you want to pass along to Waldenström’s patients?
Maria: It would be an honor to treat you and take care of you. Consider our establishment if you don’t want to go to the bigger facilities. It’s a more boutique-like atmosphere. If you come to see Dr. Eltoukhy, you will be in very good hands. It’s an honor to work alongside him.
At the end of the day, cancer care is a partnership between doctors and patients, between community hospitals and academic centers, and between healthcare teams and families.
Dr. Hussam Eltoukhy
Dr. Eltoukhy: Thank you so much for having me. It’s been a privilege to share my perspective on improving outcomes for patients with Waldenström’s, particularly within the community setting.
I hope it’s clear that high-quality cancer care isn’t limited to large academic centers. Community hospitals like ours play a vital role in delivering comprehensive, patient-centered care that’s accessible, effective, and personalized. Whether it’s through offering clinical trials, collaborating with larger academic centers, or simply being there for patients in their communities, the goal is always the same: to provide the best possible care tailored to each individual’s needs. It’s about open communication, staying informed, and making sure patients feel empowered and supported throughout their journey.
At the end of the day, cancer care is a partnership between doctors and patients, between community hospitals and academic centers, and between healthcare teams and families. By working together, we can ensure that every patient has access to the best treatments, latest research, and compassionate care that they deserve, no matter where they are. Thank you again for the opportunity to be part of this important conversation.
Pete: It’s been a pleasure speaking to both of you. I learned a lot and got a better appreciation, other than what I already have, of community care practitioners and the dedication and care they have, making sure that Waldenström’s patients are on the path to living healthier and fuller lives. You are instrumental in making sure that happens, so I commend both of you.
For Waldenström’s patients, caregivers, and families, it’s very important at the beginning to establish a good working relationship with a hematologist-oncologist who’s going to be managing your journey with Waldenström’s. It’s important to decide what practice or hospital setting you prefer to go to for periodic testing and treatments, or extended hospital stays if you should ever need them when you have some significant issues. All the doctors, nurses, physician assistants, medical staff, and clinical staff are to be commended for their commitment on a day-to-day basis to help all of us live fuller, healthier lives.
Establish a good working relationship with a hematologist-oncologist who’s going to be managing your journey with Waldenström’s.
Pete DeNardis
I want to encourage anyone around the world who’s affected by the disease to take advantage of opportunities that are out there to find the best local hospital systems that can cater to their needs but also to be involved with an organization devoted specifically to their disease, like the International Waldenström’s Macroglobulinemia Foundation. The IWMF is the only global organization dedicated specifically to the support, education, and research of Waldenström’s.
Stephanie: Thank you so much to Pete, Dr. Eltoukhy, and Maria for providing such incredible context. Self-advocacy is vital, especially for Waldenström’s where having long-term care and long-term doctor-patient relationships are so important. Don’t be afraid to speak up for yourself and ask any questions that are coming up for you, whether you’re a patient or a care partner. The keyword that Dr. Eltoukhy kept talking about was partnership. It doesn’t have to be one place or the other, as long as the medical team is working in partnership with you.
We also want to thank again our sponsor, Pharmacyclics, an AbbVie company, for its support of our independent patient program. We would be remiss to forget shouting out our partners, The Leukemia & Lymphoma Society (LLS) and the International Waldenström’s Macroglobulinemia Foundation (IWMF). Visit their websites for more on these wonderful organizations and what they provide in terms of quality services for patients and care partners in Waldenström’s.
Thank you so much for joining our program. We hope that this was helpful for you and that you walk away with more knowledge and understanding and more questions. We hope to see you at another discussion. Take good care.
Navigating Waldenströms: Getting the Best Care Close to Home
Hosted by The Patient Story
Join WM patient advocate Pete DeNardis and expert hematologist Dr. Hussam Eltoukhy as they discuss the latest in community-based cancer care, personalized treatment options, and effective communication strategies.
Thank you to Pharmacyclics, an AbbVie company, for supporting our independent patient education content. The Patient Story retains full editorial control.
