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When Terry Glassman was diagnosed with plasma cell leukemia (PCL) in November 2022, her life turned upside down in an instant. PCL is a rare and aggressive form of multiple myeloma, and Terry's initial internet searches only amplified the fear and uncertainty.

Words like “prognosis without treatment is two months” stuck with her, leaving her paralyzed with dread. But Terry’s story isn’t about despair—it’s about seeking learning and finding purpose even in the darkest moments.

!AD!

Could This Really Be Happening?

Terry’s diagnosis came at a time when she was already emotionally drained. She had just returned from helping provide hospice care for and mourn the loss of her mother, an excruciatingly painful experience, when Terry received the plasma cell leukemia diagnosis. The lab results appeared on her phone before her doctor even called her. She still remembers standing in her kitchen, unable to believe what she saw.

The news felt unbearable. And then, after a memorial service for her mother, she was diagnosed with COVID-19.

There she found herself, processing a grim diagnosis, completely isolated and feeling physically drained and depleted. Those first days were filled with fear, necessary isolation, and overwhelming anxiety. Fragmented healthcare communication also added to the difficulty of navigating her new reality.

As a nurse, Terry had the knowledge and resources to advocate for herself, but even then, the process was a struggle. She found solace when she connected with specialists at Mount Sinai, like Dr. Sundar Jagannath, who offered her not just expertise but a sense of empowerment and hope.

Defining Herself Through Cancer

\n
They say “don’t let your cancer define you”, but how can it not?
\n
It is life-changing, especially if you have a serious cancer that (for now) is considered incurable. So for now, I let my cancer define me.
\n
~it defines me as a warrior~
\n
~it defines me as a student with much to learn~
\n
~it defines me as empathetic~
\n
~it defines me as tenacious~
\n
~it defines me as caring, and loving, and giving~
\n
You can let cancer define you, just don’t let it destroy you!
\n

That poem, written by Terry, came one year after that initial diagnosis and period of fear. During these formative years, Terry has transformed her experience into one of strength and purpose.

Terry has found a caring medical team that can stay on top of the latest trends in PCL and myeloma care and explain treatment options to her. She has thrown herself into education, learning all she can about PCL and meeting others who were experiencing the same thing. She also recently started a support group for others with multiple myeloma, helping patients in her community and beyond feel less alone. Terry is also a Coach for fellow myeloma patients and a patient advocate for clinical trials.

The advice she shares with others as they begin this impossible journey, and live with their diagnoses, is simple but powerful:

See a specialist. Expertise can (and will) make all the difference.
Reach out. When you’re ready, connecting with others who have walked the same road can bring clarity and comfort.
Advocate for yourself. The healthcare system can be difficult to navigate, but being informed and persistent can improve your experience.
Keep living. “You learn to live with cancer, not die from it,” she emphasizes.

For healthcare providers, Terry offers this perspective at appointment time: “Remember, for you, it might be another day; for us, it’s the most important 15 minutes of our year. To you, we are patients; to us, you are our lifeline.”

The Journey of Care

Terry’s treatment journey reflects the complexities of living with a rare and aggressive cancer. From induction therapy (Dara-RVD) to MRD-negative results in June 2023, her path has been anything but linear. She experienced complications, adjusted medications, and faced the emotional toll of difficult decisions—such as forgoing a stem cell transplant in favor of drug therapy.

!AD!

Through it all, Terry credits her care team, particularly Dr. Jagannath and Chad Robertson, PA, for providing her with not just treatment but hope. “Having the right care team matters,” she explains. “It’s not always sunshine and rainbows, but their expertise gives me the strength to believe I can get through this.”

Getting Honest About Living with Cancer

As expressed in the earlier poem, for Terry, living with cancer isn’t about ignoring its presence—it’s about learning to coexist with it. She still wakes up every morning, wishing it would get easier. However, she focuses on what she can control, like empowering herself with knowledge, and accepts what she cannot. Her family, friends, work, and hobbies—like photography and travel—help her stay grounded.

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Terry is also deeply honest about the emotional toll cancer takes. “The diagnosis took the light-heartedness from me,” she shares. “It’s hard not to compare my life to what it might have been without this disease.” Despite this, she finds purpose in helping others and imagining a future where she continues to make a difference.

Continuing with Courage

Terry’s ongoing story is a testament to the power of community and knowledge.

By sharing her story, she hopes to inspire others to find their own strength and to remind healthcare providers of the human stories behind the diagnoses.

As Terry continues her fight, she remains a beacon of hope for others, proving that even in the face of the most aggressive challenges, there is room for light, learning, and love.

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To read more patient experiences like Terry’s, explore our Myeloma Patient Stories and Experiences articles.

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Cindy Capps’ journey as a myeloma caregiver is one of heartbreak, hope, and, most of all, love. Her story is unique—not only has she supported one loved one through the trials of multiple myeloma, but she has also navigated this challenging path twice. Cindy’s experiences highlight the incredible strength of caregivers, the importance of connection, and the beauty of life beyond a diagnosis.

A Tale of Two Diagnoses

Cindy’s journey began with Kirk Wilkerson, her first husband, who was diagnosed with low-risk smoldering multiple myeloma in 2015 at the age of 47. The diagnosis came after his blood work revealed abnormalities, which led to the denial of an insurance increase. Cindy was by his side when the doctor shared the news.

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As a mother to four children, including 10-year-old girls, Cindy’s immediate reaction was to plan for every scenario. She dove into research, mentally preparing for the challenges ahead. In 2021, as Kirk began treatment in preparation for a stem cell transplant, he contracted COVID-19. With his immune system already compromised, he tragically passed away on August 4, 2021, after a two-week hospitalization.

At the same time Kirk was diagnosed, Cindy’s college friend, Kenny Capps, had also received a multiple myeloma diagnosis. Years later, after Kirk’s passing, Kenny and Cindy reconnected through social media and their shared passion for supporting others living with myeloma. Kenny had founded the nonprofit Cancer Active, Inc. to inspire others to stay active despite their diagnosis. Together, they hosted an event in Kirk’s memory. Over time, their friendship deepened into love.

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Just a few weeks ago, Cindy and Kenny celebrated their marriage on what Cindy describes as “the most perfect day.”

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Lessons from a Caregiver

Having cared for two myeloma patients, Cindy offers invaluable advice for caregivers:

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Every Caregiver’s Journey is Unique
“There’s no one correct way to care for a myeloma patient,” Cindy explains. Each patient’s needs evolve over time, and caregivers must learn and adapt. It’s also essential for caregivers to prioritize their own well-being. “It’s difficult to put your needs ahead of your loved ones, but you absolutely have to find that time for yourself.”
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Open Communication is Key
Cindy reminds patients and caregivers to support and lean on each other. While she prefers to stay informed about her loved one’s health, she recognizes that not all caregivers want the same level of involvement. “Do your best to support and take care of each other,” she advises.
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Doctors as Partners
Cindy has encountered many compassionate doctors who see themselves as part of a team. She emphasizes the importance of caregivers being able to ask questions and participate in discussions during appointments. “Listening to the patient and caregiver empowers everyone to make the best decisions regarding care.”
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A Life Beyond Myeloma

Cindy’s story demonstrates that a myeloma diagnosis doesn’t have to define a person’s life—or their caregiver’s.

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“Many people wonder why I would ‘sign up’ to do this again,” Cindy admits. “But I know myeloma will not define our lives. People are living really long, really great lives despite having this blood cancer.”
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Through her work with the nonprofit now called Cancer Active, previously Throwing Bones, Cindy helps patients and caregivers see that they can live vibrant lives filled with adventure, love, and purpose.

Finding Strength in Support and Self-Care

Cindy attributes much of her strength to her children, family, and friends, as well as her faith. Self-care has also been pivotal in her journey. While she has always been active, yoga became a lifeline. “Yoga helped me meditate, focus, and take care of my body,” Cindy shares. Her practice has become a much-needed respite from the demands of caregiving.

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Inspiring Others to Live Fully

Cindy’s story is a testament to the power of love, resilience, and hope. By sharing her experiences, she hopes to inspire others to focus on what’s possible rather than what’s been lost. Whether it’s through her nonprofit work or her personal journey, Cindy reminds us all that life after a myeloma diagnosis can be filled with beauty, joy, and meaningful connections.

For myeloma caregivers like Cindy, the journey is not without its challenges, but it is one filled with profound lessons—and immeasurable love.

If you are interested in reading more experiences from myeloma patients and caregivers, check out our Myeloma Stories and Experiences articles.

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Caregiving for a loved one diagnosed with multiple myeloma is filled with unexpected challenges and complex decisions. Barb Mower’s story reflects the reality of caregiving with straightforwardness and resilience, offering practical advice for others on a similar path.

A Sudden Diagnosis

In February 2016, Barb’s husband, Chip, went to a doctor for back pain. Routine concerns turned critical when the doctor revealed Chip had “cancer of the blood.” An oncologist appointment and bone marrow biopsy followed immediately. The news was a shock, especially since Chip and Barb had been healthy and recently retired. Just months into retirement, they were in a whirlwind of appointments, decisions, and questions about their future.

At the time, they were living in an RV in Nevada, waiting for a mortgage approval to build a home in a place where they knew no one.

With one daughter on the East Coast for college and another planning a move to California, they were isolated from family. The diagnosis forced them to quickly evaluate where they should live, who they should inform, and how they would manage the next steps.

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Facing Reality Together

Barb attributes Chip’s approach—“It is what it is”—as a foundation that helped them face his diagnosis. For her part, Barb took on the many responsibilities that came with caregiving, allowing Chip to focus on recovery. She put it to him bluntly: “Your job is to get better, and my job is to do all the rest.” This division of roles provided structure to an otherwise overwhelming situation.

With strong support systems in the Midwest and the East Coast, after hearing the diagnosis, the question became what state to live in. Chip had always dreamed of living in the West. Honoring that wish became even more important when so much else in their lives was disrupted.

Learning Quickly

Barb learned early on that not all information is useful, especially online sources that can create unnecessary anxiety. Instead, she sought out trusted professionals and resources. A Lucky Life Interrupted by Tom Brokaw offered a perspective she found valuable. She also attended a local support group, where a fellow caregiver’s practical advice on organizing records and understanding financial aspects was invaluable.

One piece of advice—“Keep a sense of humor”—has stuck with her throughout.

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Managing Challenges with Realism

Over the years, Chip faced additional challenging health issues. Getting through these situations required staying focused on what needed to be done. Building connections with their healthcare providers helps Barb and Chip make informed choices and manage complications effectively.

Practical Advice for Caregivers

Barb’s experience has taught her a set of key strategies for handling the demands of caregiving:

Watch the Handoffs: Do not assume facilities talk to one another - a shocking lesson for Barb. They encountered many dropped balls along the way. Stay on top of communication between healthcare clinics, hospitals, and facilities, politely asking if they received the needed documents or anything else. Align yourself with an advocate in the system who can help you.
Use a physical (along with a digital) calendar: Mapping out appointments and treatments helps caregivers and medical staff understand patterns and timelines.
Communicate directly: Telling people that Chip’s condition is terminal has often been necessary to expedite support from various services. While multiple myeloma lacks a cure, the term underscores the seriousness of his diagnosis.
Seek out help: Learning to ask for help was essential. Caregiving isn’t sustainable alone.
Go to the specialists: Barb believes in consulting multiple myeloma experts over general oncologists, especially for complicated cases.
Focus on one step at a time: Each day can present new challenges, and Barb has learned to handle each one as it comes.

Barb shares her story because, early on, a fellow caregiver’s guidance gave her clarity on what she was facing. Today, Barb wants to pay it forward by helping others gain similar insights into the realities of caregiving.

Finding Structure in Self-Care

Self-care has been important for Barb, particularly through maintaining connections with non-cancer-related activities. She found value in “The Five Minute Journal” app, which allowed her to capture small moments of gratitude and perspective. She’s also taken up hobbies like photography, video-making, and crafting, which provide a creative outlet amid the challenges of caregiving.

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Barb and Chip also continue to find joy in life, especially around this holiday time, as they fill their home with special decorations, including their tradition of gnome Christmas pictures.

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Key Support Networks

For Barb and Chip, the team at Huntsman Cancer Center, especially Dr. Sborov, has been a constant source of support and expertise. Although they live hours away, Barb and Chip feel confident in their care team’s commitment and professionalism.

Barb’s story is one of realism and resilience. By sharing her experience, she offers other caregivers straightforward insights and a reminder that while the journey is difficult, it’s possible to navigate with clarity and purpose.

To learn more about Barb and hear experiences from other caregivers, watch the webinar below. If you don’t have a HealthTree account, you can sign up for free today to watch.

What's Better Than A Casserole - Myeloma Caregiver Webinar

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In December 2016, at 51 years old, Brad received life-changing news: he was diagnosed with IgM Lambda Myeloma, a rare form of multiple myeloma. Myeloma was a word he had never even heard before. The only words that stuck in his mind were “cancer” and “incurable,” which hit him like a gut punch.

Thankfully, his wife, Maria, was there to listen as the doctor explained more while Brad struggled to process the overwhelming reality. Despite his alarmingly high IgM levels, Brad was fortunate—there was no organ damage or bone lesions.

As a dedicated cyclist for over three decades, Brad noticed something unusual that summer. His long bike rides, part of his regular training for century rides, felt more challenging than usual. The rides took longer, and though he felt fine off the bike, something felt slightly off during exertion. This change led him to schedule a routine physical with his doctor—a decision that ultimately uncovered his myeloma diagnosis.

Initially, Brad was down for a few days, grappling with this curveball life had thrown at him. But soon, he realized that he had a choice: he could wallow in self-pity, or he could muster the strength to fight for his health.

Drawing on the mindset he'd developed as a cyclist, using mind against matter, Brad chose to fight.

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As he puts it, “Fighting myeloma is an endurance event, and as a longtime cyclist, my body is hardwired for endurance. I simply made the decision that I was going to out-endurance this thing.”
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Milestones and Setbacks with Myeloma

That isn’t to say that the ride has been sunshine and roses. Whether it’s the infamous dexamethasone crash or the cytokine storm (cytokine release syndrome) he had to fight after his CAR T-cell therapy, Brad has had his share of milestones and setbacks.

After the first year of treatment, tests revealed that Brad had developed both a 17p deletion and a 1q amplification, which placed him in an ultra high-risk category. His stem cell transplant, which had several grueling side effects and complications, brought him only a partial response.

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Since then, Brad has been through several lines of therapy, including an aggressive 5-drug regimen that saw him swallowing up to 26 pills in one day, paired with weekly subcutaneous injections. He even ended up having to bring pills with him on his bike ride in Paris, swallowing 8 venetoclax capsules with his lunch each day.

After two years on the five-drug combination therapy, Brad’s treatment began to fail, leading him to pursue CAR-T therapy in August 2023. This decision proved to be a game-changer, as Brad achieved Minimal Residual Disease (MRD) negativity for the first time in his battle with myeloma.

While CAR-T brought its own challenges—hospital stays with dangerously high fevers, joint pain, and even the onset of tremors long after the CAR-T occurred—Brad’s endurance and resilience, learned on the bike, have carried him through. He has continued to test negative for MRD at both his six-month and one-year checkups, giving him a deep sense of relief and victory. He is monitored monthly.

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Adapting a quote from a former pro cyclist, Brad says, “Fighting cancer is like fighting a gorilla; you don’t stop when you get tired, you stop when the gorilla gets tired.”
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Having an Outside Focus

As a full-time architect, Brad stays busy, which helps keep his mind focused on more than just the myeloma. Another escape and sanctuary continues to be his bike. In fact, just three weeks after his stem cell transplant (SCT), Brad was back on his bike, pedaling in his basement, feeling a sense of normalcy return with every light ride. He still prioritizes cycling, having just returned from a cycling vacation in Spain a few weeks ago.

London to Paris

One of Brad’s most memorable experiences was participating in the Myeloma UK London to Paris charity bike rides in 2019 and 2022, benefitting myeloma research. These 500-kilometer, four-day rides from London to Paris were truly bucket-list moments. Brad even made it onto the Sunday Today Show’s Sunday Mug Shots segment, a photo of him, his wife Maria, and his daughter Rachel proudly displayed in front of the Eiffel Tower after the 2022 ride. Brad reflects fondly on these achievements, grateful to have been able to continue doing what he loves, even while managing a complex disease like myeloma.

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Brad’s Advice to the Myeloma Community

After nearly eight years of battling high-risk multiple myeloma, Brad has several pieces of advice for others facing the disease:

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Be resilient: There will be hard days, but you have to pick yourself up and keep moving forward. Every time. No matter what.
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Celebrate small victories: Whether it’s a good test result or reaching another anniversary of your diagnosis, these moments lift your spirits and remind you to keep going.
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Stay active: For Brad, fitness has been key to his journey. Staying strong and active helped him endure the tough treatments and, to this day, gives him a sense of control over his body.
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Arm yourself with knowledge: Learn everything you can about myeloma—treatments, clinical trials, and what your blood numbers mean. Knowledge is power and will help you have informed conversations with your care team.
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Be your own advocate: Don’t shy away from asking questions. You know your body better than anyone, and your voice matters when it comes to your treatment.
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Brad’s journey with myeloma hasn’t been easy, but his family, determination, mindset, and love for cycling have carried him through.

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“I want other myeloma patients to know that you can live a high quality of life with this disease,” Brad shares, “I’ve been able to do a lot of amazing things since my diagnosis as I’ve endeavored never to let [myeloma] hold me back.”
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For more inspirational myeloma patient and caregiver experiences, read here: Myeloma Stories and Experiences

If you haven’t signed up for our myeloma newsletter, subscribe today for the latest news and learning:

Myeloma Newsletter

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Amy's life took a sharp turn in 2018 when she was diagnosed with ultra-high-risk multiple myeloma. Like many others facing this disease, her experience was marked by both good and bad years, relapses, and a series of treatments that tested her strength and resolve. However, amid the grueling treatment regimens, Amy found solace and purpose in a lifelong passion—sewing—and ultimately in creating her book, Stitches.

A Battle with Aggressive Myeloma

From the start, Amy’s myeloma journey was far from typical. After her initial diagnosis, she relapsed much quicker than most patients, a devastating reality for her and her family. Over the next two years, Amy underwent a stem cell transplant and CAR-T therapy, both offering moments of hope. In 2022, CAR-T worked well, granting her a year of remission—an outcome she had hoped would last longer.

As her journey continued, Amy tried various treatments, each with its own set of challenges. Teclistamab (Tecvayli), a bispecific antibody therapy that she hoped would help, had no effect, potentially due to her previous BCMA-targeted therapy. Selinexor (Xpovio), another option, proved to be especially tough due to its difficult side effects. However, her perseverance paid off when she began talquetamab (Talvey, Johnson&Johnson) in December of 2023. Within six weeks, her light chains dropped below normal, and she’s been in complete response since February 2024—a monumental victory.

This moment of deep response to her treatment brought with it unexpected blessings. Amy regained her energy, allowing her to enjoy seven weeks with company—something she hadn’t experienced in a long time. She continued working with her integrative oncologist, introducing dietary changes and supplements like zinc, which helped restore her sense of taste.

While her immune system remains fragile, requiring regular clinic visits and shots to boost her white blood cell count, Amy now feels like she has her life back. Her energy levels are better than they’ve been in years, and despite lingering nail issues and a low absolute neutrophil count (ANC) count, she’s enjoying a quality of life she thought might be out of reach.

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A Creative Outlet During Treatment

One of the most remarkable parts of Amy’s story is how she turned her creative passion into a source of hope and healing during her hardest days. Amy’s love for sewing started when she was just 11, learning from her mom— who sadly passed away from cancer when Amy was 16. Over the years, sewing became more than just a hobby; it was a way for Amy to stay connected to her mother and express herself creatively.

During the pandemic and her stem cell transplant, Amy’s creative focus turned to quilting. Her connection to fabric and design blossomed further when her oldest sister, inspired by their family history, invited Amy to join a writing group. Initially, the project focused on memories of their mom, but as time passed, her sister encouraged Amy to write a book about her own experiences. Although she didn’t want to write about cancer, as it was not something she wanted to dwell on, Amy embraced the idea of a book that documented her sewing journey.

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Adirondack Mountains (picture source and quilting project)

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This book, Stitches, became a labor of love. Over 18 months, Amy poured her energy into it, crafting a narrative that captured her progression from a little girl learning to sew to the accomplished artist she is today. More than just a chronicle of her creations, the book became a way to show how creativity can be a lifeline, especially during difficult times.

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As mentioned earlier, Amy wanted Stitches to focus on things that have brought her joy—her sewing projects, her journey in fashion design (wedding dresses!), and the many pieces she has created and gifted to others. The book is a testament to her resilience and determination to find light, even in the darkest moments.

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Writing her book also gave her a sense of purpose while enduring long clinic visits, many days a week and treatments. Instead of dreading the hours spent in infusion chairs, Amy focused on collecting her projects and putting them on paper, a welcome and inspiring distraction. For her, it was a way to use the time productively, showing others in a similar situation that even when facing the hardest challenges, there are ways to find positivity and purpose.

Sharing Her Story Through Stitches

This year, Amy celebrated her 60th birthday and six years of survival since her diagnosis in 2018—what she calls “60 and 6.” At this age, she has endured more than most can imagine, yet she continues to thrive and create. Her book Stitches is not just a record of her sewing projects but also a reflection of her journey—how she has stitched together moments of joy, even in the midst of adversity.

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Amy has self-published her book, selling it at cost, simply as a way to share her story. For her, it’s not about making money but about spreading the joy she has found in her craft. Readers can purchase it on Blurb.com in both paperback and e-book formats, with each copy a piece of Amy’s passion.

Amy’s quilting, sewing, and book have been therapeutic outlets, giving her something positive to focus on rather than the challenges of her cancer treatment. She continues to participate in quilting groups, like the one at Gilda’s Club, and finds deep satisfaction in gifting her creations to others.

As Amy reflects on her journey, she is grateful for the energy and resilience that allow her to continue doing what she loves. Her story is one of hope, creativity, and the belief that even in the most challenging circumstances, you can find ways to connect with what brings you joy.

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To purchase Amy’s book, Stitches, you can visit Blurb.com for both paperback and e-book options.

To read other myeloma patient and caregiver stories, visit our website: Myeloma Stories and Experiences

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Michele’s journey with multiple myeloma is one of resilience, hope, and perspective. Diagnosed in 2001 at the age of 47, she has now lived with this blood cancer for over two decades, defying the odds and embracing life with an attitude that has carried her through the many challenges she’s faced.

Accepting the Diagnosis: “Here’s One More Thing…”

When Michele first received her diagnosis, her initial reaction was one of frustration. After struggling with Lyme disease for over a decade and finally seeing improvements after long-term antibiotics, being told she had cancer felt like another mountain to climb.

Michele was diagnosed with Lyme disease at a time when few doctors were familiar with it, and even fewer were willing to treat it. During her search for answers, one doctor noticed elevated immunoglobulin levels at the level of what is called MGUS (monoclonal gammopathy of undetermined significance) and warned her of the potential of bone disease (his words, later she would discover he meant cancer). Though focused on managing Lyme disease, Michele agreed to have her hemoglobin levels monitored by her primary care physician.

In 2001, routine tests revealed that she had multiple myeloma. Still in denial, Michele remained focused on recovering from Lyme disease, reluctant to accept her new diagnosis. However, when her doctor sent a letter urging her to see an oncologist, she realized she had to confront the reality of cancer.

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\"It was just another thing I had to deal with,\" she recalls.
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She didn’t ask about life expectancy, but research revealed a grim outlook—an average survival of just three years for multiple myeloma patients. Her family, especially her partner, was devastated. Michele, however, decided to face it head-on, even as she hesitated to pursue certain treatments, haunted by the painful memory of losing her youngest sister to melanoma after chemotherapy.

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Fighting Back: Navigating Treatments and Trials

For Michele, the early days of treatment were grueling. She was prescribed high-dose dexamethasone, a steroid with difficult side effects that severely impacted her quality of life. But she didn’t face this journey alone. Within months of her diagnosis, Michele joined a support group through the International Myeloma Foundation in El Segundo, California. The community provided a lifeline of information and support. Seeing other myeloma patients who looked healthy and were leading normal lives gave her and her husband hope.

Throughout her journey, Michele remained cautious about every treatment. She was resistant to a bone marrow transplant, knowing it wasn’t a guaranteed cure. It wasn’t until 2009 that she underwent her first stem cell transplant at UCLA, but the procedure didn’t work, and she faced another transplant in 2010, followed by maintenance therapy of lenalidomide.

By 2014, Michele had run out of treatment options. She participated in a trial at UCLA for a drug combination used in leukemia, but the side effects were severe. Around this time, her dear friend and neighbor, who had also been diagnosed with multiple myeloma, suggested seeking care at City of Hope. There, she found a doctor she trusted and began participating in clinical trials again, including one using metformin.

Her last treatment breakthrough came in 2018 when she was enrolled in a CAR T-cell therapy trial at City of Hope. Despite the potential risks—like cytokine release syndrome (CRS) and neurotoxicity (ICANS)—Michele experienced none of the feared complications. She’s been closely monitored ever since and, to this day, remains in response, with no need for maintenance therapy.

The Importance of Sharing Her Story

For Michele, sharing her story is about offering hope to others.

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\"I want people to know that they are not on death’s door,\" she says.
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Having lived with myeloma for over two decades, Michele is living proof that, while the cancer is serious, it is possible to live well beyond the average prognosis. She hopes her journey can encourage newly diagnosed patients to keep fighting and to see that there is life—a rich, fulfilling life—beyond the diagnosis.

Moments that Made a Difference

Over the years, Michele has encountered people and experiences that helped her navigate the emotional and physical tolls of living with myeloma. One of the most transformative was winning a free year of acupuncture shortly after her diagnosis. The acupuncturist, trained at Yale in psychology and acupuncture in Hong Kong, became a guiding figure for Michele, helping her manage the side effects of treatment while providing emotional support. She saw him weekly from 2002 until 2023 and believes his treatments have been critical to her well-being.

Another pivotal moment came in 2005 when Michele joined a “Beat the Odds” program that focused on shifting mindset and mental health while living with cancer. The program taught her how to reframe her thinking and focus on a healthy perspective. Michele connected deeply with the message and the people she met through the group, some of whom were also defying the odds, living longer than expected.

For the past eight years, Michele has volunteered at a corgi rescue that provides care for older or medically challenged corgis, giving them a second chance at life and, sometimes, adoption. Over the years, she has adopted several corgis herself. This work has kept her focused on a meaningful cause and helped her think beyond her own challenges.

These experiences helped her realize the importance of mindset in healing, not just physically but emotionally.

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Life Beyond Myeloma

Michele doesn’t let cancer define her.

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\"There’s more to life than cancer,\" she says. \"In the beginning, you think about it all the time, but as more time passes, it’s not the first thing you think of when you wake up.\"
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Cancer may be part of her life, but it doesn’t consume her. She’s a person with myeloma, not just a myeloma patient.

Michele finds joy in the little things—spending time with her two dogs and cats, watching birds in her backyard, or sharing moments with friends.

She never expected to live long enough to see the birth of her four grandchildren, but she did, and she’s forever grateful as they are one of her biggest joys in life. Writing has also been an outlet for her creativity, including participating in a workshop offered by her hospital. Poetry has been a wonderful outlet for her across the years.

One of the most important lessons she’s learned is to maintain a sense of humor. Even though cancer is a tough journey, Michele believes that finding humor in life’s moments has been essential to her survival. \"It’s a terrible thing,\" she says, \"but it’s a gift because it changes your perspective.\"

Advice for the Myeloma Community

Michele’s advice to others living with myeloma is simple: “Find joy in life as much as you can.” From the “Beat the Odds” program to the strength of her relationships, Michele has learned that maintaining a healthy mindset and focusing on the power of gratitude - and what brings happiness - can make all the difference.

Now approaching 71, Michele has mastered the art of acceptance. This skill has been vital as she’s faced incredible losses, including her daughter to COVID-19. Despite these challenges, she continues to defy the odds and move forward.

\"I see myself as a whole being who happens to have cancer,\" she says, \"and I accept whatever may come.\" And that, for Michele, makes all the difference.

To read more from patients' and families’ experiences living with myeloma, read through our collection here:

Myeloma Stories and Experiences

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For patients with multiple myeloma and their loved ones, the cancer journey can be filled with uncertainty and challenges.

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Gregory Proctor has certainly dealt with his share of challenges since being diagnosed with multiple myeloma.

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His diagnosis was a shock; the timing of it could not have come at a more inconvenient time (though, is there ever a convenient time for a cancer diagnosis?)

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During the COVID-19 pandemic, pain in Greg's back, leg, and hip (which eventually led to his complete inability to move) finally led to his multiple myeloma diagnosis.

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As he entered induction therapy, he was shocked to discover that his insurance wasn’t willing to pay. Although Gregory had consistently met his premiums for years, the insurance company required a $15,000 deductible to be paid before they would resume coverage.

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Shocked, Greg and Monica contemplated. They had been without revenue during the pandemic had experienced some unfortunate financial situations a few years earlier, and simply didn’t have that kind of cash flow available at this point in their lives.

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Frankly, Greg and Monica were desperate, so they humbled themselves to ask friends and family for aid, set up a GoFundMe page, and finally went to the Veterans Hospital to ask for assistance.

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They entered the facility with hope, but it wouldn’t be easy. After being denied several times, Greg finally received their support (and full coverage) after going through diagnostic myeloma tests again and finding the right doctors to advocate for him.

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Thankfully, Greg’s induction therapy and stem cell transplant got him into remission, and to this day his myeloma remains under control.

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These setbacks and experiences have inspired him to help other multiple myeloma patients. He volunteers with the LLS and has written a book to inspire them to go through their journeys with faith, strength, and courage.

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You can find a copy here if you're interested in reading his book.

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Amazon Book Link

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*Disclaimer: HealthTree Foundation has no financial relationship with the purchase of this book.

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If you and/or your loved ones are struggling financially due to your myeloma diagnosis, check out our financial resources page or connect with a myeloma financial coach in order to get the support you need today. You're not alone!

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\n","isBmh":true,"language":"EN","metaDescription":"In his new memoir, Gregory O. Proctor shares his experience battling this disease, offering hope and inspiration for others going through similar journeys.","metaTitle":"Greg Proctor's Journey with Multiple Myeloma","publishedAt":{"_type":"Date","value":"Fri Aug 23 2024 06:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"myeloma patient experience, myeloma stories, myeloma patient, myeloma book, myeloma book review","slug":"greg-proctor-book-review","status":"ACTIVE","title":"A Story of Faith, Strength, and Courage: Greg Proctor's Journey with Multiple Myeloma","updatedAt":{"_type":"Date","value":"Wed Aug 21 2024 20:50:24 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/articles/cW0l8iRnlcZAjrSSqagH"},"snapshot":{"exists":true,"id":"cW0l8iRnlcZAjrSSqagH","ref":{"_type":"DocumentReference","path":"apps/community/articles/cW0l8iRnlcZAjrSSqagH"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/NHGxATfMkDBufbp0CS1N"},"categories":[],"category":{"_type":"DocumentReference","path":"apps/community/categories/19hxT6XALz8ds00eORms"},"createdAt":{"_type":"Date","value":"Thu Aug 15 2024 23:54:14 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2Fgrace%20hwang%20fundraising_93f624d0-03ca-407c-aa90-f040c65b183a.jpg?alt=media","htmlContent":"

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"Cancer was and is the gift I didn’t want, but I so needed. In an instant, it changed me, turned my world upside down, and then shifted my perspective on how to live my remaining days with purpose, intention, joy, and gratitude."
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With these powerful words, Grace Hwang ended a successful fundraising event on behalf of the HealthTree Foundation.

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Early June, Grace reached out to HealthTree to help host a myeloma research fundraiser to celebrate her 40th birthday and new journey with multiple myeloma. For a couple of years, she had plans to celebrate her 40th in the south of France. However, when she was diagnosed with myeloma in January of this year, her priorities shifted.

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"Celebrating my 40th seemed out of the question," Grace shared. "My goal at that time had abruptly shifted to learning as much about this cancer and staying alive and healthy."
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A month into her diagnosis, Grace and her husband attended a seminar hosted by the HealthTree Foundation.

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"I was incredibly touched by all the hard work put in and the care the people involved in hosting the seminar," she recalled. "There was accessible and free education, support groups, other patients in the same boat and a panel of renowned doctors. I left feeling less anxious: I was empowered, supported and hopeful in moving my life forward with this disease."
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This experience had a profound impact on Grace.

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"HealthTree helped me build that foundation of gratitude and hope that is so needed for every patient," she explained. "The impact they had on me at the beginning stages of my diagnosis was an integral part of shifting my perspective from fearing the cancer to conquering the cancer. There was no question about who I would have wanted to partner with for this fundraiser."
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The event was held at Sweet Elle in Huntington Beach, a business Grace started in 2007. Around 250 family members, friends, members of her Huntington Beach community, and customers helped celebrate and support this new chapter of her life. There was her mother’s Korean BBQ, a DJ, and specialty drinks. Close family members and friends spoke about her life and shared their special memories with her and the impact she had on them.

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Grace spoke last, and there was a tangible silence of respect. She touched upon how her cancer essentially saved her from focusing too much on the little things that didn’t matter in life, truly missing out on what was important: family, friends, and living in gratitude and peace. Her family and friends left the celebration with renewed inspiration, hope, and gratitude, even for their own lives.

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Join Grace Hwang in Celebrating Her 40th Birthday by Supporting Myeloma Research!

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Together, they raised over $10,000 already, but the fundraiser continues as Grace hopes to raise $40,000 in 40 days to mark her 40th birthday.

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We invite all myeloma patients and their loved ones to help Grace reach her goal. All donations will be redirected entirely towards myeloma research, which will help us find a cure faster.

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donate here

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!AD!

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Inspired by Grace's story? Learn how you can host your own fundraising event for HealthTree and help accelerate myeloma research! Visit our Get Involved page to get started.

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It’s hard to find a multiple myeloma patient who was as involved or influential as Jack Aiello. Called “patient advocate extraordinaire” by Cure Today, Jack led myeloma advocacy, education, and support on an international level.

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A horrible backache led Jack to his multiple myeloma diagnosis in 1995. His children at the time were 16, 14, and 10. Though originally given a prognosis of just a few years, he received the miracle of celebrating 50+ years with his wife, walking his daughters down the wedding aisle, and bouncing his grandchildren on his lap. There was no greater joy to Jack than his family.

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Jack was a pioneer patient, being one of the first to receive thalidomide as a myeloma treatment. Jack received tandem autologous stem cell transplants which didn't work, and an allogeneic transplant (rarely used in today’s myeloma) allowed him to have a long remission beginning in 1998. He would watch subsequent myeloma therapies unfold over the course of three decades.

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After nearly 30 years of living with myeloma, Jack peacefully passed on Saturday, July 13th, 2024. His cause of death was not his myeloma but other health conditions.

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A Tireless Advocate

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Jack was a long-time Myeloma Support Group Leader for the International Myeloma Foundation (IMF) in the San Francisco Bay Area and was recently added to the IMF's Board of Directors.

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He was also an active member of the Patient Advisory Board for the HealthTree Foundation, a member of the IMF’s Global Myeloma Action Network, and a volunteer and advocate with the Multiple Myeloma Research Foundation (MMRF).

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Intentionally involved in the myeloma scene, he was also a patient advocate on scientific review committees such as the NCI Symptom Management and Quality of Life (SxQoL) Steering Committee and the NCI’s Patient Advocate Steering Committee (PASC); and was a member of the SWOG Cooperative Group Myeloma and Patient Advocacy Committees; an Emeritus Board of Director of the Patient Empowerment Network; a participant at Stanford’s Scientific Review Committee; and a volunteer for the LLS First Connection and Cleveland Clinic Fourth Angel programs.

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Jack participated annually in the International Myeloma Working Group (IMWG) and the American Society of Hematology (ASH) Meetings.

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He often shared his thoughts on multiple myeloma through his active “X” (Twitter) account.

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Jack believed in multiple myeloma clinical trials, did his best to improve processes, side effects, and patient quality of life by participating in the scientific advisory board. He strongly encouraged patients to enroll in trials appropriate for them to forward myeloma research.

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Throughout his myeloma journey, he also fundraised hundreds of thousands of dollars for multiple myeloma research projects across many organizations.

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Tributes to a Dear Friend

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Jack's absence will profoundly affect the myeloma community. Several of his colleagues have contributed to this article to honor and remember their beloved friend.

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Jim Omel, MD, is a fellow myeloma advocate and widely known as Jack's best friend. He shares:

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Jack Aiello was one of the most qualified and successful people to ever lead an IMF support group. His large San Jose, CA group is highly educated, has excellent speakers, and interesting monthly meetings.

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I knew that about Jack when we first met at an annual ASH (American Society of Hematology) meeting close to 20 years ago. I told Jack, however, that he had much more potential than just to be a great support group leader. I explained that he needed to become a myeloma Cancer Research Advocate.

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He needed to work with the NCI (National Cancer Institute) cooperative group leaders who design myeloma trials and also needed to learn how to recruit new patients for trials. Jack could give patients important input as to how clinical trials are designed, and he could tell the NCI how to make clinical trials acceptable to frightened patients wondering what treatment to choose. I assured Jack that he did not need an MD degree to do this important work.

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Jack took my suggestion seriously. He educated himself and joined SWOG when a myeloma committee position became available. He did such a good job with new studies and proposed protocols that the NCI recognized his worth. Jack was invited to, and served on, the NCI Myeloma Steering Committee for two terms (six years). This is both a great honor and a big job, requiring board members to compare, evaluate, and vote on every NCI-related clinical trial in the USA.

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As time went by, when Jack returned to ASH he saw and heard updates about the very trials he had discussed and voted on. When he wrote his fabulous post-ASH reports Jack explained the trials which were productive and most helpful for patients because he had had a part in designing those trials. Jack knew the PI (principal investigator) of each trial personally and talked with him or her freely.

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Jack took my challenge and ran with it. I helped him get started, and we reviewed a few trials together along the way, but he did it himself! Jack became one of the best myeloma research advocates we’ve ever had!

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HealthTree CEO and Founder Jenny Ahlstrom remarks:

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Jack was one of the best mentors and friends that has ever existed in multiple myeloma. He advocated tirelessly for himself and for his myeloma peers. I was so fortunate to meet Jack and he was gracious enough to mentor me in advocacy as well as mentoring so many others in how to involve the patient voice in research.

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Jack always asked the most pointed questions and was no nonsense. He was a doer and a pusher of progress. His knowledge about myeloma was extraordinary and he took every opportunity possible to share that knowledge with others in so many ways. His early treatment of Thalidomide affected his legs, making it physically challenging for him to attend meetings and conferences, but he was there at every meeting tirelessly working on behalf of the advancement of the myeloma field for his peers.

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Jack was a key and vocal member of HealthTree's patient advisory board. He was a dear friend and perfect example of how we should live our lives regardless of our challenges. His passing leaves a hole in our hearts and in the myeloma community.

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Cindy Chmielewski shared more than a decade of friendship with Jack. She states:

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Jack was a fierce advocate, caring mentor and a dear friend. Jack’s wit always put a smile on my face. I will miss him dearly, but his spirit will live on.

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Jack's tireless advocacy allowed him to make lasting friendships with those working in the pharma industry.

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Chad Saward from Kite Pharma, and formerly with BMS and Celgene, shares:

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I have had the privilege of knowing and working with Jack for over 15 years. Jack has participated as a member of patient advisory committees to help my organization be patient centric. Jack reviewed study protocols, informed consent forms, patient materials, position statements and more. There has been a strong sense of trust between Jack and I which I believe allowed Jack to ask difficult questions and challenge when things needed to be challenged.

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Jack had an excellent understanding of science and research and always wanted the clinical development process to address patients' unmet needs. In the end, what I am most proud of is that for well over a decade I have called Jack my friend. I will miss him dearly.

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Fatima Scipione, formerly of Takeda Oncology and now with Blueprint Medicines, said:

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Jack was truly one of a kind. Meeting him for the first time meant you had to earn his approval, but once you were "Jack-approved," you were embraced into his circle. His intelligence and pragmatism were remarkable, complemented by his sharp, wry sense of humor that always kept you on your toes. Jack had a unique ability to inspire those around him to become better advocates. He could hold his own with any oncologist and took great joy in engaging with them to advance the field of myeloma and strive for a cure.

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I am deeply grateful to Jack for holding me accountable and responsible in our advocacy work within the industry. His influence made me better, and I will always cherish the numerous lessons he imparted. Most of all, I will treasure our friendship. Jack adored his family and grandchildren, and his face would light up whenever he spoke about them.

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The world has lost a hero. Rest in peace, Jack.

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Scott Campbell from Takeda Oncology adds:

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I am deeply saddened to learn of Jack's passing. I had the honor of meeting Jack in 2013 during an Ambassador Summit, and I have had the privilege of working with him in various capacities since then. Jack's presence commanded attention, and his words carried wisdom and insight that resonated with all who were lucky enough to hear him speak.

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Beyond his remarkable advocacy work, Jack was a devoted father, and I was fortunate to consider him a mentor.

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We thank Jack for his tireless service to the multiple myeloma community and wish Nell and his family and loved ones peace during this time of great loss. Jack will be sorely missed.

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Sources:

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Jack Aiello | International Myeloma Foundation
Jack Aiello
Myeloma Today in conversation with Jack Aiello
Meet the Advocate: Jack Aiello | SWOG
Patient Advocate Extraordinaire

\n","language":"EN","metaDescription":"We honor Jack Aiello, a multiple myeloma patient who tirelessly spent his time advocating for fellow myeloma patients and caregivers.","metaTitle":"Jack Aiello, Myeloma Advocate Extraordinaire","publishedAt":{"_type":"Date","value":"Mon Jul 15 2024 04:00:00 GMT+0000 (Coordinated Universal Time)"},"seoKeywords":"jack aiello, myeloma stories, myeloma patient experiences, myeloma tributes, jack aiello myeloma, jack aiello myeloma advocate,","slug":"jack-aiello-tribute","status":"ACTIVE","title":"Jack Aiello, Myeloma Advocate Extraordinaire","updatedAt":{"_type":"Date","value":"Fri Jul 26 2024 19:40:30 GMT+0000 (Coordinated Universal Time)"}},"included":{},"ref":{"_type":"DocumentReference","path":"apps/community/articles/ThY0AO7v2RU9OjMDyE9Z"},"snapshot":{"exists":true,"id":"ThY0AO7v2RU9OjMDyE9Z","ref":{"_type":"DocumentReference","path":"apps/community/articles/ThY0AO7v2RU9OjMDyE9Z"}}},{"data":{"author":{"_type":"DocumentReference","path":"apps/community/authors/NRcFf0ATixvpHmsyX2JM"},"categories":[],"category":{"_type":"DocumentReference","path":"apps/community/categories/19hxT6XALz8ds00eORms"},"createdAt":{"_type":"Date","value":"Tue Jun 18 2024 16:07:12 GMT+0000 (Coordinated Universal Time)"},"disease":{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"},"diseases":[{"_type":"DocumentReference","path":"diseases/GxAhXAnh3drV4xY5Vf3A"}],"headerImageUrl":"https://firebasestorage.googleapis.com/v0/b/healthtree-production.appspot.com/o/gallery%2Fpublic%2Fhelping%20hands_507cccd3-d80d-4a16-805f-adf0bda7b00a.jpg?alt=media","htmlContent":"

Vicki Jones is a myeloma patient and active HealthTree Cure Hub user. In a recent interview published by Cancer Care Northwest, she shares her personal 20-year myeloma journey.

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Vicki was diagnosed with multiple myeloma when she was 51. After learning that only 51% of myeloma patients are still alive five years after diagnosis, Vicki prepared for the worst.

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“I’ll never get to see what kind of an old lady I’d be.”

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Following her diagnosis in 2004, Vicki was referred to Cancer Care Northwest (CCNW) Medical Oncologist and Hematologist Dr. Hakan Kaya. She began rigorous treatment immediately, undergoing various therapies including antibody medications, steroids, and immunosuppressants. Each treatment came with its own set of side effects. In 2007, Vicki underwent an autologous stem cell transplant, one of the early transplants performed by Dr. Kaya and the Inland Northwest Myeloma/Lymphoma Transplant Program. She also received radiation therapy and dealt with breaks in her myeloma-weakened bones. She lost most of her sense of taste and half of her fingernails on her current regimen. Despite these challenges, Vicki maintains a positive outlook. “In spite of it all, believe it or not, my quality of life has been pretty great! My husband and I winter in Arizona, we travel, we learned pretty quickly to seize the day. Most people have no idea that I have cancer."

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Despite the odds, Vicki celebrates the 20th anniversary of her diagnosis in June 2024 at 71.

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“I love every wrinkle on my face and every gray hair on my head!”

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Vicki Jones, now 71, has defied the typical prognosis of multiple myeloma. Her story is an ode to resilience and the advancements in myeloma treatment.

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"Against the odds, I’m here! I’m alive!"

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Vicki attributes her success to several factors, including her supportive husband, Dan.

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"I'd be remiss if I didn't mention my wonderful, supportive care-partner husband, Dan. Failing to give him credit would be like winning an Oscar and not thanking your director."

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$\"\"$ Her body has responded well to most of the drug regimens, but she acknowledges that myeloma always returns. “I truly think I might not be here without Dr. Kaya, his medical team, and the all-around superior care I've received at Cancer Care Northwest. I love going there. I've been to many other cancer clinics over the years, both big and small. None hold a candle to CCNW!"

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Dr. Kaya continues to monitor Vicki’s disease closely. From the very beginning, he has tailored her treatment to ensure the best possible outcome while aiming to minimize side effects. “He didn’t just put me on a treatment and leave it; he was continuously monitoring and adjusting my treatment.”

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Vicki’s treatment plan is ever-evolving as myeloma becomes refractory to medications. She remains actively involved in her care with HealthTree Cure Hub, continuously learning about her disease, attending seminars, and networking with other survivors. Since 2019, she has been a Myeloma Coach with the HealthTree Foundation, helping over 70 myeloma patients understand and cope with the disease.

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Living with multiple myeloma requires access to a wealth of resources and support. Vicki has participated in educational videos and has been featured in various healthcare articles, contributing to the knowledge available to patients and caregivers.

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Vicki emphasizes the importance of being an advocate for your health.

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“Ask the questions, listen to your body, and collaborate with your healthcare team! Discover all you can about your disease, but remember to set it aside and live your life. If you’re fighting to stay alive, make sure to live!”

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Vicki Jones' story is about resilience, hope, and the power of community and advanced medical care. Her journey highlights the importance of support, ongoing research, and personalized treatment in managing multiple myeloma.

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Get Help From Other Patients Like You With the HealthTree Coach Program

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Receiving a cancer diagnosis is not easy and requires skills and direction. HealthTree’s team of patient and caregiver volunteers is here to help you navigate this diagnosis with a compass, not a map. Our volunteers can help guide you in finding and using the best resources so you can better navigate your care.

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Coaches can provide guidance on topics such as finding a specialist, learning about financial aid, or using online and digital resources to help you live longer and better.

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FIND A COACH

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Source:

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Survivor stories: Vicky’s determination

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Could This Really Be Happening?

The news felt unbearable. And then, after a memorial service for her mother, she was diagnosed with COVID-19.

Defining Herself Through Cancer

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They say “don’t let your cancer define you”, but how can it not?
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It is life-changing, especially if you have a serious cancer that (for now) is considered incurable. So for now, I let my cancer define me.
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~it defines me as a warrior~
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~it defines me as a student with much to learn~
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~it defines me as empathetic~
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~it defines me as tenacious~
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~it defines me as caring, and loving, and giving~
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You can let cancer define you, just don’t let it destroy you!
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That poem, written by Terry, came one year after that initial diagnosis and period of fear. During these formative years, Terry has transformed her experience into one of strength and purpose.

The advice she shares with others as they begin this impossible journey, and live with their diagnoses, is simple but powerful:

See a specialist. Expertise can (and will) make all the difference.
Reach out. When you’re ready, connecting with others who have walked the same road can bring clarity and comfort.
Advocate for yourself. The healthcare system can be difficult to navigate, but being informed and persistent can improve your experience.
Keep living. “You learn to live with cancer, not die from it,” she emphasizes.

The Journey of Care

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Getting Honest About Living with Cancer

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Continuing with Courage

Terry’s ongoing story is a testament to the power of community and knowledge.

By sharing her story, she hopes to inspire others to find their own strength and to remind healthcare providers of the human stories behind the diagnoses.

As Terry continues her fight, she remains a beacon of hope for others, proving that even in the face of the most aggressive challenges, there is room for light, learning, and love.

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To read more patient experiences like Terry’s, explore our Myeloma Patient Stories and Experiences articles.

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New research presented at the 2024 American Society of Hematology (ASH) Annual Meeting demonstrates that early intervention with daratumumab can significantly delay the progression from smoldering multiple myeloma to active disease in high-risk patients.

The phase 3 AQUILA trial, published in the New England Journal of Medicine, showed that patients receiving daratumumab had a 51% lower risk of progression compared to those under active monitoring.

In this exclusive interview, Dr. Thanos Dimopoulos discusses the groundbreaking results of the AQUILA trial and their implications for patients with high-risk smoldering multiple myeloma. Dr. Dimopoulos explains how this new approach could change the way we think about early intervention in myeloma precursor conditions.

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\"These results represent a new option for high-risk patients and their physicians to consider when weighing the pros and cons of treatment versus active monitoring,\" explains Dr. Meletios A. Dimopoulos, lead investigator and professor at the National and Kapodistrian University of Athens School of Medicine.
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In early November 2024, the FDA accepted daratumumab for priority review in high-risk smoldering myeloma patients, marking a potential shift in the treatment approach.

Understanding the AQUILA Trial

The international study included 390 patients with high-risk smoldering multiple myeloma (SMM), a precursor condition where patients have more than a 50% risk of developing active myeloma within two years. Participants received either subcutaneous daratumumab for up to three years or underwent active monitoring.

Key findings after 5.5 years of follow-up include:

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63.1% of daratumumab-treated patients remained progression-free at five years, compared to 40.8% in the monitoring group
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The median time to myeloma progression was not reached in the daratumumab group, while it was 41.5 months in the monitoring group
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Fewer patients needed to start myeloma treatment in the daratumumab group (33%) compared to the monitoring group (52%)
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Importantly, patients who received early treatment with daratumumab showed encouraging survival trends, with 93% alive at five years compared to 86.9% in the monitoring group.

How Does Daratumumab Work?

Daratumumab (Darzalex, Johnson&Johnson) is a targeted therapy that works differently from traditional chemotherapy. It's a monoclonal antibody that specifically targets myeloma cells while helping your immune system fight the disease. Learn more about how daratumumab works with Healthtree University.

Safety and Quality of Life

The treatment proved generally well-tolerated. While moderate to severe side effects occurred in 40.4% of treated patients compared to 30.1% in the monitoring group, few patients (5.7%) needed to discontinue treatment. The most common significant side effect was high blood pressure.

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\"This is the first study to show improved outcomes with an agent that is not chemotherapy in patients with a myeloma-related condition,\" notes Dr. Dimopoulos.
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The treatment's ability to prevent serious complications typically seen at myeloma diagnosis represents a significant advantage for patients.

Looking Ahead

Daratumumab offers several advantages as an early intervention option. Unlike other treatments considered for high-risk SMM, like lenalidomide with dexamethasone, daratumumab is time-limited (three years) and doesn't cause long-term immunosuppression.

However, Dr. Dimopoulos emphasizes that these findings specifically apply to patients with high-risk SMM. Future research will explore whether combining daratumumab with other medications could further improve outcomes.

The AQUILA trial results suggest that carefully selected high-risk patients may benefit from early intervention, potentially changing the traditional \"watch and wait\" approach in smoldering myeloma management.

Key Takeaways

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Early treatment with daratumumab may be an option for carefully selected high-risk SMM patients
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The treatment is given for a fixed period of three years
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Regular monitoring and evaluation by specialists is essential
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This approach is specifically for high-risk patients and may not apply to all SMM cases
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Discuss with your healthcare team whether you might be a candidate for this treatment approach
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Sources and Further Reading

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Read the full study: Daratumumab or Active Monitoring for High-Risk Smoldering Multiple Myeloma
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View the clinical trial details on ClinicalTrials.gov: A Study of Subcutaneous Daratumumab Versus Active Monitoring in Participants With High-Risk Smoldering Multiple Myeloma
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Read the complete ASH 2024 abstract #773
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FDA Review of Daratumumab for High-Risk SMM
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Understanding Smoldering Multiple Myeloma
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Pain is one of the most distressing symptoms for myeloma patients, and managing it effectively is important for improving their quality of life. Opioids, strong pain-relieving medications, are commonly used to manage moderate to severe pain in myeloma. However, the overuse of opioids has led to significant public health concerns, highlighting the need for a balanced approach to pain management.

Karen Sweiss, PharmD of the University of Illinois at Chicago, in collaboration with HealthTree Foundation, conducted a study in HealthTree Cure Hub Registry, which shed light on how myeloma patients experience and manage pain.The research results were presented at the ASH 2024 conference.

Read insights from the study below.

How Pain Affects Myeloma Patients

From May 2023 to July 2024, 563 patients diagnosed with symptomatic myeloma responded to a 31-question survey. The findings revealed that 54% of these patients experience daily pain, with many reporting that their pain often affects their mood, sleep, and relationships.

Despite many patients being in remission, half of them continued to experience pain, which they attributed either to the cancer itself or its treatment. Alarmingly, 29% felt their pain was inadequately managed, and 38% rarely or never discussed pain with their oncology care team.

Common reasons patients underreported their pain were due to fear of starting new treatments or the feeling that their doctors were not attentive. Patients also didn’t report their pain as they often felt like a ‘bother’ to their treatment team.

Impact of Opioid Use Among Myeloma Patients

The survey also explored opioid usage patterns among myeloma patients. A significant proportion of patients (76%) had taken opioids to manage their pain. Notably, those at moderate to high risk of opioid abuse were more likely to use opioids than those at low risk. This pattern persisted even when patients were in remission, indicating a continued reliance on opioids.

Moreover, a significant number of patients had not had a discussion with their healthcare providers about the possibility of stopping opioids, and 35% reported not being educated on opioid use by their oncology team.

If you feel that you have not received enough education about opioid use, ask your doctor or pharmacist to inform you about things you need to know. This may include understanding potential risks, signs of abuse or addiction, the importance of following prescription instructions, and when to seek help for potential issues.

Opioid Use Surrounding Stem Cell Transplant

Among patients who received an autologous stem cell transplant (ASCT), 40% were taking opioids before the procedure, and 15% began using opioids for the first time during their hospital stay. After their transplant, a significant number of patients continued to use opioids. In fact, 26% of them were still taking these pain medications for more than three months after they went home from the hospital.

Prior research from Dr. Sweiss showed that there is a negative impact of long-term opioid use on myeloma patient survival after their stem cell transplant. Finding ways to reduce opioid use while effectively managing pain for myeloma patients is vital to their health in the long term.

Adding a Palliative Care Provider to Your Care Team

One way to properly manage pain as a person with myeloma is to add a trained professional in pain management, referred to as a palliative care provider, to your care team. Concerningly, only 9% of myeloma patients were referred to a palliative care provider by their doctor in the study. Raising awareness of palliative care providers can help improve this gap.

When you meet with a palliative care provider, discuss what pain you are feeling specifically. This will help reduce the chance of receiving medicine you don’t need and connect you to the right resources.

For example, in the study, 39% of patients reported nerve pain like tingling or numbness in the hands/feet, commonly known as neuropathy Unfortunately, only a low percentage of these patients received the proper treatments for nerve pain, like anticonvulsants and antidepressants.

A pain management specialist can help connect you to the right medicines for the pain you are experiencing. This can also support you in reducing your risk of long-term exposure and possible addiction to opioids.

Summary

Dr. Sweiss' study highlights the ongoing challenges myeloma patients face with pain management. Even in remission, many patients continue to experience pain that significantly affects their quality of life. There is also a concerning pattern of prolonged opioid use, especially among those at a higher risk for opioid abuse.

To manage your pain effectively and safely, open communication with your healthcare provider is crucial. If you're experiencing pain, it's important to speak up about it. Ask your doctor to refer you to a specialist in pain management, known as a palliative care provider. Being clear about the types of pain you're experiencing can influence the treatment you receive. This approach not only addresses your pain more effectively but also helps minimize long-term reliance on opioids, reducing the risks associated with their chronic use.

To stay up to date with more ASH 2024 news, visit our site: HealthTree Conference Coverage.

Advance Myeloma Research Through HealthTree Cure Hub Registry Surveys

To participate in myeloma research like the study above and improve patient outcomes, click the button below to access simple surveys in HealthTree Cure Hub Registry.

Participate in Myeloma Surveys

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The Best of ASH is a selection of research abstracts that highlight the most cutting-edge science presented in the oral sessions during the annual American Society of Hematology (ASH) meeting.

This year’s session was presented by the 2024 Scientific Program Co-Chairs Drs. Jennifer Trowbridge and Sant-Rayn Pasricha.

In this article, we'll cover the most relevant abstracts for researchers and healthcare professionals working in hematology and blood cancers. The board considered the following themes as most influential for selecting the abstracts:

New mechanisms of cancer cell selection and dominance in cancer blood cell formation
Emerging treatment strategies in acute myeloid leukemia (AML)
Prevention and intervention therapies in multiple myeloma and myeloproliferative neoplasms (MPN)
Considerations for standard-of-care in lymphocytic leukemia and lymphoma

The Best of ASH for Blood Cancers

1. Targeted protein degradation reveals a repressive role of MECOM at the CEBPA Locus to prevent differentiation in high-risk acute myeloid leukemia (AML)

This research delves into the role of the MECOM gene in AML. It reveals that MECOM acts as a key regulator of gene expression, specifically repressing genes that promote cell differentiation. It also may influence the lack of transformation of new blood cells, making them blasts (which are the main identifier of AML cells).

What are the therapeutic implications of this study?

Targeting MECOM could be a new and effective way of treating AML.

To explore this abstract, click here.

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2. Development of a first-in-class CAR-T therapy against carleticulin-mutant neoplasms and evaluation in the relevant human tissue environment

This research focuses on a treatment called CAR-T cell therapy. This new CAR-T targets a specific mutation in the CALR gene found in certain types of myeloproliferative neoplasms (MPNs), such as myelofibrosis.

It is pre-clinical, so patients haven't received it yet, but in experimental models, this therapy has been effective. Researchers also explored combining this CAR-T cell therapy with other treatments, such as bispecific antibody therapies that are limited in patients where other treatments, like JAK inhibitors, are insufficient.

To explore this abstract, click here.

3. Phase 3 randomized study of daratumumab monotherapy versus active monitoring in patients with high-risk smoldering multiple myeloma: primary results of the AQUILA study

Smoldering myeloma is a precursor to multiple myeloma, with limited treatment options currently available for high-risk patients. The AQUILA study explores a new treatment using daratumumab, a therapy already proven effective in active myeloma. Based on these findings, the company has submitted an application to the FDA for daratumumab's approval to treat high-risk smoldering myeloma.

We cover more details in the following articles:

4. Fixed-duration acalabrutinib + venetoclax with or without obinutuzumab vs chemoimmunotherapy for first-line treatment of chronic lymphocytic leukemia (CLL): interim analysis of the multicenter, open-label, randomized, phase 3 AMPLIFY trial

CLL therapies usually contain BTK inhibitors, venetoclax, and/or immunotherapy. This research aims to assess the safety and efficacy of these combinations and proves a low incidence of heart-related side effects typically associated with BTK inhibitors.

We cover more comprehensive details from the session given by the lead investigator here.

5. Ibrutinib-rituximab is superior to rituximab chemotherapy in previously untreated older mantle cell lymphoma patients: results from the international randomized controlled trial, ENRICH

This new combination is used to treat mantle cell lymphoma, a type of B-cell non-Hodgkin lymphoma, in which aggressive treatment options are not considered appropriate for older patients. Considering that the median diagnosis age is 71 years old, there is a need for endurable treatment options. The current standard of care includes immunotherapy, R-CHOP, and bendamustine.

This phase 2/3 trial provides strong evidence that ibrutinib-rituximab should be considered a standard of care for first-line treatment of older patients with mantle cell lymphoma. The median progression-free survival (PFS) for patients who took ibrutinib-rituximab was 65.3 months compared to 43.4 months in the R-CHOP arm.

This finding has the potential to significantly improve outcomes for elderly patients with mantle cell lymphoma.

To explore this abstract, click here.

6. Real-world outcomes of CD19 CAR-T cell therapy in adult patients with relapsed and refractory transformed indolent lymphoma

Indolent lymphoma is associated with lower overall survival; that's why understanding real-world outcomes of an effective therapy such as CAR-T is important, as there is not yet a standard of care approach for this group of patients. This study demonstrated that patients with transformed indolent lymphoma had high complete remission (CR) rates in response to CD19 CAR-T therapy, slower onset of cytokine release syndrome CRS (common in CAR-T), and lower incidence of ICANS.

The conclusion is that the results of this study suggest that CD19 CAR-T is highly effective for treating transformed indolent lymphoma.

To check out this abstract, click here.

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7. In Vivo barcoded CRISPR-Cas9 screen identifies Ncoa4-mediated ferritinophagy as a dependence in Tet2-deficient hemopoiesis

This abstract explores the role of the TET2 gene in clonal hematopoiesis (CH), a condition characterized by the expansion of mutated blood stem cells. To identify the genes involved, the researchers conducted an in vivo CRISPR-Cas9 screen, which revealed NCOA4, a regulator of iron metabolism. Cells with mutations in the gene TET2 exhibit increased mitochondrial activity, which demands significant iron for optimal function.

What are the therapeutic implications of this study?

Understanding the role of iron metabolism can lead to therapies that target it. NCOA4 could mitigate the growth advantage of TET2-mutant cells, offering a new path for therapeutic intervention in clonal hematopoiesis and related blood disorders.

To read more on this abstract, click here.

8. DnmT3a controls hematopoietic stem cells via DNA methylation-independent regulation of telomeres

Understanding the functions of DNMT3A may provide insights into the development of blood disorders associated with DNMT3A mutations. This study suggests that DNMT3A has functions beyond DNA methylation, including a potential role in regulating telomere length and DNA damage response. This role is also essential for cell longevity and function.

Read more about this abstract by clicking here.

With Healthtree, You Can Contribute to Research Too!

The advancements presented during the 2024 Best of ASH session highlight the remarkable progress in blood cancer research, offering hope for more effective and personalized treatment strategies. These breakthroughs would not have been possible without patients' participation in clinical trials.

By joining a clinical trial, you can accelerate life-saving research and help bring innovative therapies to others battling blood cancers.

Together, we can build a brighter future. You can create a free HealthTree account to access all of our tools, like the clinical trial finder, answer surveys, and learn from news articles where we cover global conferences like ASH more fully!

Join HealthTree, the platform that powers life-saving research!

CREATE MY FREE ACCOUNT

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A press release hosted at the 2024 ASH conference shared insights from several studies on how lifestyle choices influence people with blood cancer. Read summaries from the research highlights below.

A High-Fiber Diet After a Stem Cell Transplant Reduces the Risk of GVHD

Research led by staff scientist Jenny Paredes, PhD, from the City of Hope National Medical Center suggests that a high-fiber diet following an allogeneic stem cell transplant could decrease the risk of graft-versus-host disease (GVHD) by fostering a healthy gut microbiome.

The study challenges the typical post-transplant low-fiber dietary guidelines, which might be counterproductive by harming microbiome health and reducing gut microbial diversity.

The findings showed that maintaining a high-fiber diet could not only improve gut health but also enhance survival rates and reduce acute GVHD symptoms, especially in the lower gastrointestinal tract. However, Dr. Paredes noted that for some patients, especially those with IBD (inflammatory bowel disease), reducing fiber might help avoid discomfort, underlining the need for tailored dietary recommendations.

High-Fiber Plant-Based Diet May Slow Cancer Progression to Multiple Myeloma

Myeloma specialist Urvi Shah, MD, from Memorial Sloan Kettering Cancer Center, provided research from the NUTRIVENTION study that showed a high-fiber plant-based diet helped patients by improving their metabolism, microbiome, and immune system. This included an improved body mass index (BMI), insulin sensitivity, healthier gut flora, and reduced inflammation.

The study showed promising results, indicating delayed progression of multiple myeloma precursors such as MGUS or smoldering myeloma in some of the patients and a healthier immune environment, potentially due to beneficial changes in the gut microbiome.

To support Dr. Shah in advancing this research, click here to review your eligibility to join the NUTRIVENTION3 study.

Smoking Correlated with Gene Mutations that Worsen MDS

Sangeetha Venugopal, MD, MS, from Sylvester Comprehensive Cancer Center, led research efforts to evaluate the correlation between smoking and increased rates of gene mutations found in people with myelodysplastic syndromes (MDS).

Reviewing the records of almost 2,000 MDS patients, over half of these had a history of cigarette smoking, and 18% were still smoking at the time of diagnosis. Dr. Venugopal found that smokers generally had more mutations in their genes than non-smokers, and the number of mutations increased with the number of pack-years smoked, indicating a dose-response relationship.

Additionally, smoking was associated with a higher rate of cancer progression and a lower overall survival rate among patients compared to non-smokers or those with a shorter history of smoking. If you need help quitting smoking, talk to your doctor about available support options.

Metabolite BHB Created During the Keto Diet May Support CAR T-cell Therapy

Researcher Shan Liu, PhD, and colleagues from the University of Pennsylvania investigated whether specific diets could improve the effectiveness of CAR T-cell therapy.

After testing several diets, they found that the ketogenic diet showed promise in reducing tumor size in mice. The researchers believed a compound made during ketosis called beta-hydroxybutyrate (BHB) was the potential key factor for this impact.

Early data from laboratory studies showed that BHB improved CAR T-cells’ ability to multiply and enhanced their fitness. CAR T-cells could use BHB as an energy source to boost their anti-cancer activity.

It is important to note that you should never make significant changes to your diet or start any supplements without first discussing them with your healthcare team, who can review the potential benefits and risks based on your specific situation.

Evaluating BHB as a supplement in combination with CAR T-cell therapy has not yet been tested in humans. A clinical trial is now underway to review this for people with large B-cell lymphoma (LBCL). More research will help doctors fully understand BHB’s implications for patient care.

GLP-1 Medicines Decrease the Risk of Developing a Vein Blood Clot for People with Type 2 Diabetes

Although the research findings below involve a blood condition called venous thromboembolism, not blood cancer, we included them in the article summary because the insights from this condition may benefit you.

GLP-1 agonists, like semaglutide, appear to offer benefits beyond aiding in weight loss and supporting people with type 2 diabetes to manage blood pressure.

New research from junior medical resident Cho Han Chiang, MD, and colleagues at Mount Auburn Hospital shows that if you have type 2 diabetes, GLP-1 agonists may reduce your risk of developing a vein blood clot (venous thromboembolism [VTE]) by 20% more than people who use DPP-4 inhibitors (another type of medication used to treat type 2 diabetes).

Stay Tuned for More ASH 2024 Coverage

Stay tuned for more ASH coverage in the coming weeks as we share the results of new research in easy-to-understand articles. Access it here: HealthTree Conference Coverage.

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Sources:

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Welcome, Announcements & Introduction

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This show will not be live streamed. You can submit your questions in advance by clicking the button \"Notify when available.\"

New discoveries in multiple myeloma are made possible through a deep understanding of the disease. Many researchers contribute significantly to these breakthroughs by performing essential lab work, often without ever treating patients directly.

In this episode, we’re joined by Dr. Brian Van Ness, a PhD researcher from the University of Minnesota who has dedicated decades to studying the biology and genetics of multiple myeloma. Dr. Van Ness shares how his lab research has laid the foundation for new insights into this complex disease and how his unwavering love for patients has driven his work during his extensive career.

Tune in to learn how cutting-edge research translates into better outcomes for the myeloma community and how researchers like Dr. Van Ness are shaping the future of care.

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