MORE. Not a word you’d expect to associate with myeloma, is it?
Actually, it may the perfect word for looking beyond this rare, incurable, AND treatable, blood cancer.
Myeloma Awareness Month is our time to recognize more: that patients and survivors are more than a myeloma diagnosis. More than statistics.
And The Leukemia & Lymphoma Society (LLS) is laser-focused on providing more:
- More compassion and support for the people diagnosed with myeloma and their caregivers
- More myeloma research and treatment options
- More awareness that myeloma is a blood cancer for which we offer free information, resources, and support
You are not a disease: you are living with one. Myeloma is not your whole story—just a chapter. There’s more to do. More life to live. And, because of constant medical advances, more hope for the future.
MORE… ABOUT MYELOMA
Myeloma forms in white blood cells called plasma cells. Healthy plasma cells are part of the immune system and make proteins called “antibodies,” which help fight infection. Myeloma develops when a plasma cell is changed (mutated). The mutated plasma cell (myeloma cell) multiplies, and, if untreated, these cells continue to grow in the marrow. They crowd out the healthy plasma cells and the normal stem cells in the bone marrow that form the white blood cells, red blood cells, and platelets. This can:
- Weaken the immune system
- Raise protein levels in the blood and urine, which can lead to kidney damage
- Damage and weaken bone, which can lead to bone pain and fractures
- Result in death
In many cases, myeloma is a chronic and often painful condition. The mental and emotional toll it takes on patients, survivors, caregivers, and families is difficult to measure. And difficult to manage. There can be periods of remission (when the cancer is not detectable) and periods of relapse (when the cancer returns).
Today, we know:
- An estimated 168,234 people in the U.S. are living with or in remission from myeloma
- An estimated 35,780 new cases of myeloma (19,520 males and 16,260 females) were expected to be diagnosed in the U.S. in 2024
- Black Americans have more than twice the incidence rate of myeloma than White Americans
MORE… HOPE. PERSONIFIED.
If there’s an example of hope for people facing a myeloma diagnosis, it’s Alice, a myeloma survivor since 1999. Alice is proof that it’s possible to live a full and active life with myeloma. “There are great therapies available now and a lot of reasons to hope,” she tells others.
At 43, Alice was diagnosed with multiple myeloma (meaning the cancer was in multiple places), like 90 percent of myeloma patients. It was shocking. Being White, female, and much younger than the median age of 69, she didn’t fit the typical myeloma patient demographic—at all. “At the time of my diagnosis, my prognosis was 2-4 years,” she shares. That prognosis didn’t fit her, either.
As a pediatrician, she knew where to find information and the help she needed. But not everyone has that advantage. In fact, not everyone knows myeloma is a blood cancer. And not everyone knows that LLS offers information, resources, and support for all blood cancer patients.
MORE… ABOUT DEFYING THE ODDS
To get the best care, Alice and her husband left their home in Georgia and their three children to be treated at the University of Arkansas Medical Center, a nationally recognized center for multiple myeloma treatment. She recounts, “I never thought I would see my children grow up, graduate from high school, college, and grad school and get married and have children.”
But she defied the odds. After intensive chemotherapy, she had two autologous stem cell transplants (harvesting and using her own healthy stem cells that were returned to her bloodstream by intravenous (IV) infusion. The stem cells travel in the bloodstream to the bone marrow where they begin to divide and make new blood cells in a process called engraftment) within 6 months. She recounts, “As a pediatrician, I was well versed in childhood blood cancers, but I didn't know much about LLS.” Her eyes were opened when she went for treatment, and one of the counselors told her about LLS financial support that could apply to her.
She went into remission officially in January 1999 and, to pay her good fortune forward, she went back to work, and she’s been working for more than 26 years, more than 2 decades longer than the prognosis her doctors first gave her. “My oncologist tells me that I'm his longest surviving patient,” she shares.
MORE... THAN MYELOMA
Managing myeloma—that’s just a chapter in Alice’s long story. She’s done so much more in her life. She enjoys time with her children and grandchildren and discovered hiking with her daughters and activities with her “Georgia Sole Mates” Team In Training friends. She found purpose and community in her work and with The Leukemia & Lymphoma Society (LLS). “I realized I needed to make the most of my life and not be afraid. The experience changed me and made me more willing to take [chances], which led me to LLS,” she explained. She treasures her encounters with other survivors and people impacted by blood cancer.
So, in 2000, she and her husband participated in their first of many LLS fundraisers, America’s Most Beautiful Bike Ride. They enjoyed the ride and comradery so much that they not only biked around Lake Tahoe but also tacked on the additional route—totaling 100 miles!
Since then, Alice has been unstoppable: “I have since participated in 16 LLS events: biking Lake Tahoe, Alaska half marathon, the Disney World half marathon, hikes in Yosemite (4 times, including Yosemite Falls, Half Dome and the Panorama Trail twice), Rocky Mountain 4 times, the Augusta 70.3 Ironman, Mount Kilimanjaro in Tanzania, Mount Washington, Columbia River Gorge, and Climb2Cure in Patagonia)—and I'm thinking about signing up for Peru this summer!”
And she’s now nearly 70 years old!
Alice knows that with more treatment options—many of which have been or are LLS-supported—there is more hope for patients. More time. Between 2003 and 2019, the 5-year survival rate for myeloma jumped from 40% to 62%. And without a doubt, the survival rate is even higher today.
Why so many LLS events? “I feel like I'm giving back for the excellent medical care I've received, helping to fund financial support for patients and contributing to research for better treatments with fewer side effects and greater results—longer remissions and better quality of life,” Alice responds.
MORE… THAN LEUKEMIA & LYMPHOMA
LLS is so much more than our name. Did you know we offer FREE information, education, and support for people impacted by more than 100 blood cancers? Including myeloma. Our goal is to make your life a little easier. That’s the work we’ve been doing for over 75 years.
Whether it’s through a phone call, online chats, a webcast, a podcast, or our website, we’re here for you—and our services are very accessible. For starters, check out our myeloma-specific booklet and guide for patients and caregivers.
And here are a few more resources:
- Personalized support from our Information Specialists, highly trained oncology social workers and nurses, who will listen to your concerns, answer your questions, and assist through treatment, financial, and social challenges
- Access to clinical trials through our Nurse Navigators, who will speak to you about clinical trials and other treatment options specific to your unique situation, and personally guide you or your loved one through the entire clinical trial process
- Nutrition consultations with our registered dietitians, who provide oncology nutrition education
If myeloma affects you, look to us. Chances are, we can help more than you know. In the meantime, we’ll keep supporting the development of more and better myeloma treatments, and we’ll be striving to enable more patients and survivors to live longer and fuller lives. People like Alice.
Because they, like you, are more than myeloma.