Hallmark of most multiple myeloma cases is the persistent production of some form of immunoglobulins, a phenomenon that brings the disease to attention. However, there is a subset of multiple myeloma patients who do not secrete immunoglobulin or its component parts into either the blood or urine, hence called non-secretory myeloma. Some non-secretory myeloma patients may produce the immunoglobulin proteins but they have defects in secretion. Due to lack of these protein biomarkers in blood and urine, it may be difficult to assess and treat the disease. Our myeloma panel is talking to Dr. Frits Van Rhee about latest developments and new options available in assessment and treatment of nonsecretory myeloma.  Listen to podcast.

Brian Walker is the director of research for the UAMS Myeloma Center. March is Multiple Myeloma Awareness Month, and Walker discusses what that special focus on myeloma means, his research and how the UAMS Myeloma Center’s world-leading status for the research and treatment of it drew him to accept his position here more than a year ago.

March 2, 2017 | Ambassador Ruth A. Davis traveled the world as a U.S. diplomat during her 40 years with the U.S. Foreign Service.

But when she learned she had a relapse of multiple myeloma, a cancer of plasma cells in the blood, she headed to Arkansas and the UAMS Myeloma Center.

“I’ve often had people ask me, ‘Why don’t you go somewhere in the area, closer to home.’ I tell them, ‘Listen. This is a question of my life and I will go where the best treatment is available,’” she said recently on a visit to UAMS.

Davis, who lives in Washington D.C., has been receiving treatment from UAMS for a decade now. She was diagnosed with multiple myeloma in 2000 and was told she would live three years. Davis decided to come to UAMS after a friend recommended it to her.

“My experience with UAMS has been wonderful,” Davis said. “It has exceeded my expectations. The staff is accommodating. There is a community that has been developed to assist the patients of UAMS. They’re welcoming and competent. It gives me the confidence I need to proceed with fighting this disease.”

A trailblazer throughout her 40 years with the Foreign Service, Davis says she enjoyed every minute of it. She was the first African-American director of the U.S. Foreign Service Institute, and the first African-American woman to be director general of the Foreign Service. In 2016 she became the first African-American to receive the American Foreign Service Association’s Lifetime Contribution to American Diplomacy Award.

Davis has led a colorful life and proudly adds, with a smile, that she is an official Arkansas Traveler – a designation bestowed upon her by the governor. She’s usually accompanied by her sister Eugenia Davis-Clements, her caregiver and a former physician. The two women love meeting new people and are rarely seen without a smile or encouraging word.

While Davis says having multiple myeloma and going through treatments has slowed her down some, she refuses to let it stop her. In November, she traveled to Europe twice: to Brussels to chair the conference of the International Women’s Entrepreneurial Challenge and then to Vienna for the 50^th anniversary of the United Nations Development Organization.

Davis is under the care of Frits van Rhee, M.D., Ph.D., director of developmental and translational medicine at the UAMS Myeloma Center.

“I feel that I get the individual attention that I need. I’m not just a case study. I’m a patient with a real need and he is responsive to that. He’s one of the best in the business so I’m delighted to be a patient of Dr. van Rhee.”

Established in 1989, the Myeloma Center was the first center in the world devoted exclusively to research and clinical care of multiple myeloma and related disorders. Patients have come to the Myeloma Center from every state and more than 50 countries.

Melissa Thomas, RN III – The Myeloma Center

Congratulations to Melissa Thomas, RN III for being selected as the DAISY Award recipient for the month of March!

Melissa works in The Myeloma Center and was nominated by a co-worker who was also a patient.  The nomination below reflects how Melissa impacted her life in a very special way.

“During an EPIC class in the Barton Building, my glucose level dropped. I had been having trouble with my vision and am awaiting cataract surgery. My co-worker, Melissa Thomas, who was also attending class, was sitting across the aisle from me and was watching me to see if I needed help with class activities. I was using a desktop magnifier to help me view the screen, but it was difficult to get through the class. At one point, I just couldn’t figure things out anymore. I am told that Melissa kept getting up out of her seat to help me place the mouse where it belonged on the screen, and to put my fingers on the correct keys on the keyboard. She later told me that she noticed my hands were clammy and my pupils were pinpoint. I became unable to respond to her or my classmates and instructors. She recognized that I might have low blood sugar, and sprang into action, working with other people in the class to get me eating jelly beans, drinking juice, etc. My glucose finally got to 42 and then to 67 but I was not responding. The rapid response team was called and I was taken to the Emergency Department. Thanks to Melissa’s clinical observations and prompt action, I did not go into a coma and possibly die, although I am sure it was a very close call.”

Great job, Melissa!

To learn more about the DAISY award or to nominate a deserving licensed nurse, please visit: http//nurses.uams.edu.

Feb. 9, 2017 | The UAMS Myeloma Center, an international leader in myeloma research and clinical care since 1989, sees more myeloma patients than just about any other center in the world. The institute’s specialists treat myeloma day in and day out.  That is a distinct advantage for patients.  And, recent research indicating that patients fare better when treated at experienced medical facilities supports that advantage.

Findings from the Mayo Clinic in Rochester, Minnesota, show that people diagnosed with multiple myeloma are more likely to survive longer when treated at a medical center that sees lots of multiple myeloma patients. Published this past fall in the Journal of Clinical Oncology, “Association Between Treatment Facility Volume and Mortality of Patients With Multiple Myeloma” concludes that patients treated for multiple myeloma at facilities with high patient volume had a lower risk of death than those treated at facilities with lower patient volume.

The study, based on 94,722 patients treated at 1,333 facilities and adjusted for sociodemographic and geographic factors and comorbidities, noted some clear factors that play a role:

• Most hematologists/oncologists in general practice see only two new and six established patients with multiple myeloma each year. It is difficult to be proficient with such a small caseload that comprises only 2% of one’s practice.
• An unprecedented number of new drugs are becoming available for the treatment of multiple myeloma, and there is a wealth of new information about myeloma biology at the molecular level that is revealing targets for precision medicine approaches. Multiple myeloma is becoming increasingly complex to classify according to risk and to treat. A hematologist/oncologist in general practice cannot possibly stay current on everything pertaining to multiple myeloma while staying current on other, more common cancers.

“It is nice to have a study that validates what we have known for a long time,” said Gareth Morgan, M.D., Ph.D., director of the UAMS Myeloma Center and professor of Internal Medicine in the College of Medicine. “Those of us who have devoted our careers to treating multiple myeloma understand that it takes a long-term, single-disease focus to truly appreciate the nuances of multiple myeloma and the factors that influence treatment choices for individual patients. We take this even further by integrating genetic studies with clinical findings to guide individual treatment plans.”

In addition to participating in international meetings where the latest clinical and research findings are shared among professional colleagues and staying abreast of peer-reviewed publications in the leading journals, Morgan and his team take advantage of the vast wealth of patient-related data that has been collected over decades at the Myeloma Center. The data, which can be continually assessed as new, sophisticated analytical tools become available, reveal outcome patterns that shed light on which treatment methods are the most effective.

Another distinct advantage of centers that have had a high patient volume for many years is the presence of a well-oiled infrastructure. For example, other clinical services at UAMS, including nephrology, cardiology, hematopathology, radiology and orthopaedic surgery, have worked collaboratively with the multiple myeloma program and have built expertise in diagnosing and caring for the array of medical issues that can complicate treatment. Nursing staff in both the inpatient and outpatient settings also have specialized training that enables them to anticipate and quickly react to symptoms of the disease and treatment side effects and provide comprehensive care based on a keen understanding of the disease.

“Multiple myeloma is very complex,” said Faith Davies, M.D., the UAMS Myeloma Center’s director of developmental therapeutics and professor of Internal Medicine in the College of Medicine. “A coordinated, multi-disciplinary team is essential for addressing the needs of patients and their loved ones. Having a large number of patients has helped drive an integrated, collaborative effort. In addition, community volunteers, as well as local hotels and restaurants, cater to our patients and are important components of our service that promote optimal outcomes. We are blessed to have such a wonderful community that goes out of its way to help our patients feel at home.”

As the Mayo study pointed out, substantial gaps in clinical outcome exist based on how many patients are treated.  If patients are able to come to a center like the UAMS Myeloma Center, their chances of doing well are improved.

When multiple myeloma strikes, patients deserve to have options for getting the best care possible. The UAMS Myeloma Center, with its almost 30-year history of pioneering and outstanding care that has attracted patients from across the globe and its expertise honed over years of caring for multitudes of patients, is committed to being the go-to center of choice and giving every patient the best chance for a long, disease-free life.

Photo by Christer Berg / Bailey McNeill’s raw crystal necklaces and bracelets bring joy to the wearer while also supporting myeloma research. McNeill donates half of her proceeds to the Myeloma Center to help further development of curative therapies.

Feb. 10, 2017 | Bailey McNeill of Raleigh, North Carolina, is a UAMS Myeloma Center rock star.

McNeill’s father was diagnosed with multiple myeloma at Duke University Hospital when she was in third grade. “He sat down with my sisters and me and explained that he would be traveling with my mom to a facility — apparently the best — in far-away Arkansas for more tests. It was the first time I ever saw him cry,” she said.

Now a freshman at the University of North Carolina at Chapel Hill, McNeill remembers the anger and sadness she felt in that moment. “It was not until I was older in high school that I learned more about his disease and how special it is that he is still with us, thanks to the doctors at the Myeloma Center,” she said.

It was also during her high school years that McNeill honed a hobby that would ultimately make a difference for others living with multiple myeloma, a cancer of plasma cells in the blood.

“I got interested in making jewelry when I saw companies like Free People or Urban Outfitters selling raw crystal jewelry. I had hundreds of crystals just sitting around, and I knew I could make similar pieces,” said McNeill, who has always had an eye for crystals and sparkling rocks.

She started out making holiday gifts for family members. Then, inspired by her father’s myeloma journey, she developed her talent into an online business. Her one-of-a-kind necklaces and bracelets bring joy to the wearer while also supporting myeloma research – McNeill donates half of her proceeds to the Myeloma Center to help further development of curative therapies.

McNeill knew that she wanted her hard work and time to amount to more than just a profit. “I pretty much built my business around donating to UAMS,” she said. To date, McNeill has donated $5,645.

McNeill’s exclusive source for her gems is Randall Glen, located about 15 minutes outside of Asheville, North Carolina. The mine offers “dig your own buckets” at various price points, depending on the size of the stones. A $10 bucket typically contains small stones like garnets and amethysts that are abundant in the North Carolina mountains. Larger buckets, that can cost as much as $150, contain larger, flashier gems.

While in high school, McNeill would often spend 40 or more hours each week on her jewelry business, producing 80 to 200 pieces each year. Now that she is in college, it’s more like 20 hours. With a major in global studies and a likely minor in entrepreneurship, her free time is limited.

“It has been hard to make and get out a bunch of orders since I’ve come to school. If I don’t have as much time to take photos of my pieces, then I promote them less on social media, resulting in less demand and orders. It’s a lot to keep up with,” she said.

McNeill continues to be encouraged and inspired by her dad. He comes to UAMS twice a year for check-ups and is on an active treatment regimen. “He handles it like a champ and is always upbeat,” she said, adding that he remains involved in his work, a wholesale produce business founded by McNeill’s great grandfather.

“Though my contribution is small, I hope my business is helping the program that has done so much to help my family and me; it’s the least I can do,” she said.

Oct. 27, 2016 | Sean Murray of Kimberling City, Missouri, was working a stressful job in November 2008.

His project list was long and deadlines were coming due. So, yes, he noticed the pain in the upper middle part of his back. But the 49-year-old figured it was a pinched nerve or a pulled muscle and decided it was just another annoyance he’d have to deal with.

Ten days after the pain started, it became too big to ignore. At this point, Murray had been sleeping in a recliner because it hurt to lay down. He dragged himself to his primary care physician who ordered x-rays and referred him to an orthopaedic surgeon.

“I had a feeling I was in good hands. The surgeon had the same name as an actor who plays Superman. He was, in my mind, Dr. Superman,” Murray said.

Results from an MRI and CT scan led the surgeon to suspect Murray had an advanced case of multiple myeloma.

Murray was asleep when the doctor called that evening. Karen, his wife, answered the phone.

“He told her he was going to refer me to one of the best places in the world that treats multiple myeloma. She automatically started to think of well-known hospitals like MD Anderson or the Mayo Clinic,” Murray said.

He says his wife’s first reaction to the doctor was “Are you kidding?” when he recommended a facility in Little Rock.

“There isn’t another institute like it in the world,” said Gareth Morgan, M.D, Ph.D., professor and director of the UAMS Myeloma Center. “We have lots of patients, half of which come from outside of Arkansas. We were the first people who could make the claim that we can cure myeloma.”

Morgan says the survival rates are twice as good at UAMS as they are in other myeloma treatment centers. Over a ten-year period, 50 to 60 percent of UAMS myeloma patients are alive and well, compared to 20 to 30 percent in other comparable facilities.

Morgan attributes it to the use of a combination of different classes of drugs: one that enhances the immune system, one that targets the proteosome and antibody therapy. Morgan describes the antibodies as silver bullets that target only cancer cells, leaving healthy parts alone and limiting side effects.

“It’s an interesting example of how taking science and genetics into the clinic has allowed us to first understand the disease, then target treatment to the genetics of the disease and improve survival,” Morgan said. “Focusing on that is what we believe gives us success.”

For his treatment, Murray moved to Little Rock for ten months. It was a challenging time, he said. His wife was with him whenever possible. She was an elementary school music teacher, in graduate school at night, and was taking care of their two daughters, Katie and Elizabeth, who were 11 and 5 at the time. He was happy to have a close network of family and friends from all over the country helped him when his wife was with the children in Missouri.

When Murray went home and began his three-year chemotherapy maintenance period, he started a blog to keep his friends and loved ones updated without having to repeat his story several times. He called it Myeloma Youreloma.

“It began as a place where people could check in to see how I was doing and what my thoughts were,” Murray said.

His blog caught the attention of editors at The Myeloma Beacon. Since then, Murray had the opportunity to write a patient perspective on their website. He’s written more than 75 entries. Murray says his goal is to encourage other myeloma patients to not give up hope.

“This disease is willing to take everything away from you if you let it,” Murray said. “It’s as if the sun stops shining and you lose passion for things you once cared about. It’s an all-consuming disease, if you allow it to be.”

Murray says during his darkest times, his wife and two children are his motivators to beat his illness. He and Karen adopted their daughters from China. Katie had been left alone on the steps of a Buddhist temple. Liz had been left in a factory courtyard before they were taken to orphanages.

“One thing that keeps me going when I want to give up is the sad thought of leaving my daughters. I don’t want them to be abandoned again. I tell myself, ‘I may not be able to do this for Sean Murray. But I would do anything for Kate and Liz’s dad and Karen’s husband.’ Thanks to UAMS, I am still here with my family.”