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A PUBLICATION OF

WINTHROP P. ROCKEFELLER

CANCER INSTITUTE

SPRING 2019

MYELOMA CENTER THIRTY YEARS OF INNOVATIVE TREATMENT


“With the integration of the Myeloma Center into the UAMS Winthrop P. Rockefeller Cancer Institute, a promising future lies ahead.�

I am honored to present the spring 2019 issue of Myeloma. In this issue, we look back at 30 years of clinical and research excellence devoted exclusively to the treatment of multiple myeloma and related conditions. While our progress is worth celebrating, there are still advancements to be made. With our patients as inspiration, we remain committed to the ongoing research process and the quest for better ways to diagnose and treat myeloma. This issue highlights our longestserving Myeloma Center faculty member, Joshua Epstein, D.Sc., as he prepares to retire this year. Dr. Epstein’s commitment has propelled our research forward for many years, benefiting countless patients both now and in the future. We are thankful for his service and wish him well as he moves into this new phase of life. I hope you also will take time to read the stories of our inspiring survivors and committed physicians and scientists. With the integration of the Myeloma Center into the UAMS Winthrop P. Rockefeller Cancer Institute, a promising future lies ahead. Working as one, we strive daily to advance our programs in patient/clinical, basic laboratory and population-based research. Expansion of these areas is essential in our quest to achieve designation by the National Cancer Institute (NCI). There are 70 NCI-designated centers across the United States, and by achieving this status both UAMS and Arkansas would see many benefits, including an increased ability to receive research funding; improved access to clinical trials and new therapies; and the creation of new, high-paying health care jobs. I am grateful for your support of the UAMS Myeloma Center and wish you a healthy and prosperous year.

Laura Hutchins, M.D. Interim Director, Winthrop P. Rockefeller Cancer Institute University of Arkansas for Medical Sciences 2

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Directors The Myeloma Center, founded in 1989, remains an international leader in myeloma treatment and research and related plasma cell disorders. We have pioneered many advances and were first to describe myeloma as curable. Using advanced knowledge of cancer biology and the latest genomic tools, we continue developing new and targeted cutting-edge treatments. Years ago, our myeloma patients could only expect to live a couple of years. Currently, the expected five-year survival rate for our newly-diagnosed patients is 74 percent, and survival of at least 10 years is 57 percent. Our “total therapy” approach, using precision treatments targeting each patient’s unique disease, reduces relapse and residual disease. Novel immunotherapy drugs are now included in total therapy trials. Moving forward, we’re working toward curing myeloma. We have performed 11,138-plus transplants during the last 30 years and I look forward to the additional lives we extend in the next 30. Frits van Rhee, M.D., Ph.D. Clinical Director of the Myeloma Center

Last year great strides were made in research at the UAMS Myeloma Center. We published more than 50 manuscripts on patient imaging, genomics, clinical trials, patient welfare and more. We covered a wide range of plasma cell diseases including myeloma, plasma cell leukemia, Castleman disease and amyloidosis, as well as the precursor states of monoclonal gammopathy of undetermined significance (MGUS), and smoldering myeloma (SMM).  At the annual American Society of Hematology conference in San Diego in December where 30,000-plus clinicians and researchers meet to learn about new discoveries, the Myeloma Center presented 24 abstracts on our recent discoveries, including three prestigious oral presentations.  We would not be able to make these discoveries without our patients who volunteer samples for our research through our translational research studies. Our hope for 2019 is to make more discoveries to help our patients in the future. Brian Walker, Ph.D. Director of Research,Myeloma Center

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Three Decades of Stellar Care and Treatment at Myeloma Center Touches Countless Lives . . . . . . . . . . . . . . . . 5 Blazing New Trails: the Myeloma Center Through the Years . 8 Longtime Nurse Reflects on Three Decdes of Myeloma Treatment at UAMS . . . . . . . . . . . . . . . . . . . . . . . 10 Professor, Founding Member of UAMS Myeloma Center Reflects on Three Decades of Research . . . . . . . . . . . 12 The Myeloma Center, with two clinical trials underway, is a leading center in treatment focusing on bi-specific antibodies — A Brief Primer . . . . . . . . . . . . . . . . . . 14 Partners in Care . . . . . . . . . . . . . . . . . . . . . . . . . 15 UAMS Physician Establishes International Guidelines for Treating Castleman Disease . . . . . . . . . . . . . . . . . . 16 UAMS Meloma Researchers Link Size and Number of Focal Lesions as an Indicator of Prognosis . . . . . . . . . . 18 Long-Term Myeloma Survivor Uses Photos, Humor to Inspire Cancer Patients . . . . . . . . . . . . . . . . . . . . . 20 Publications . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Myeloma Patient, Now in Remission, Bounces Back After Relapse . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Into the Arms of Strangers . . . . . . . . . . . . . . . . . . 26 Patient Finds Humor in Hairy Situation . . . . . . . . . . . 29

SPRING 2019 EDITOR Linda Haymes CREATIVE DIRECTOR Mindy Stout PHOTOGRAPHER Johnpaul Jones INTERIM DIRECTOR UAMS Winthrop P. Rockefeller Cancer Institute Laura Hutchins, M.D. CLINICAL DIRECTOR Myeloma Center Frits van Rhee, M.D., Ph.D. DIRECTOR OF RESEARCH Myeloma Center Brian Walker, Ph.D. CHANCELLOR University of Arkansas for Medical Sciences Cam Patterson, M.D., MBA

Octogenarian Completes Second Ride for Research for UAMS Myeloma Center . . . . . . . . . . . . . . . . . . . . 30

Myeloma is published twice a year by the Myeloma Center, University of Arkansas for Medical Sciences 4301 W. Markham St. #816 Little Rock, AR 72205

Nursing Student Interested in Research Cycled for it via Ride for Research . . . . . . . . . . . . . . . . . . . . . . . 34

Phone: 501-526-2873 myeloma.uams.edu

Myeloma Center's Ride for Research 2018 . . . . . . . . . . 31

On the Cover: Then and now, the Winthrop P. Rockefeller Cancer Institute

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Three Decades of Stellar Care and Treatment at

Myeloma Center Touches Countless Lives

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Lillian Dameron, then 78, of Holly Lake Ranch, Texas celebrated as the 10,000th patient on Nov. 9, 2011.

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ounded in 1989, the UAMS Myeloma program grew to become a high-patient-volume center known nationally and internationally for its excellence in research and patient care and greatly improved survival. Through its 30-year history the Myeloma Center has pioneered novel advances in diagnosing and treating myeloma and related diseases. Bart Barlogie, M.D., who led the UAMS Myeloma program from its creation until 2014, introduced tandem autologous transplants in myeloma, discovered thalidomide as a novel treatment, and introduced genomic profiling to risk-stratify myeloma into high and low subgroups. “Most people in transplant today do some form of induction, stem-cell transplant, and maintenance therapy afterward to prevent a recurrence of the disease and some incorporate consolidation therapy, too,” said Frits van Rhee, clinical director of the Myeloma Center. The concept first began with the total treatment protocols approach pioneered at St. Jude’s Children’s Research Hospital in Memphis in the late 1970s in the treatment of children with acute blastic leukemia.

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“They were very successful in developing this approach,” van Rhee said. “Back then, this form of leukemia was a fatal disease. Now, more than 90 percent of children are cured. So that’s where this concept of induction, transplant, consolidation and maintenance comes from.” When the benchmark of 40 percent of the children at St. Jude’s achieving complete remission was reached, some of them didn’t relapse and that’s when the first cures were seen. Myeloma is unique in that it is sensitive to highdose treatment. It was thought that high-dose treatment achieved complete remission and perhaps extended the complete remission rate by as much as 20 percent. “So then it was thought, if two in a row were performed, you might achieve remission rates of 40 percent. That’s similar to what is seen at St. Jude’s and that’s where Dr. Barlogie came up with the idea of doing tandem transplants,” van Rhee said. The Myeloma Center continues to offer very extensive therapy in terms of chemotherapy and consolidation and always uses two or three drugs as maintenance. Today, this concept of induction, at least one transplant, and post-transplant therapy with maintenance has been adopted by many treatment centers.

Total Therapy Approach On Nov. 21, 1989, the Myeloma Center launched its Total Therapy approach, the basis for treatment that is now used all over the world. The approach features three or four main phases of treatment and with successive trials, novel drugs are incorporated as they became available. Total Therapy 1 ran through March 1996. “Total Therapy 2 began in 1998 and incorporated thalidomide and in Total Therapy 3, bortezomib was introduced in 2003,” van Rhee said. Total Therapy 4, launched in 2008, was the first clinical trial for low risk-myeloma as defined by gene expression profiling. Total Therapy 5 was the first clinical trial for high-risk myeloma and

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offered more frequent, but smaller doses of chemotherapy, a so-called ‘dose-dense’ strategy. The idea was to avoid long treatment-free intervals, which allowed for the regrowth of more aggressive disease. “In the second version of TT-5, a new drug, carfilzomib, was incorporated,” van Rhee said. In 2017, the Total Therapy 7 trial opened, exploring the use of anti-CD38 monoclonal antibody, daratumumab, to improve progression-free survival in newly diagnosed, high-risk patients. “TT-7 was the first time we included new immune treatment during all phase of the therapy,” van Rhee said. The consolidation chemotherapy therapy was replaced by daratumumab, a monoclonal antibody that works with the immune system. “We tried to give less chemotherapy overall and hoped, by using the antibody and an immunological approach, we would avoid chemotherapy-related side effects, yet improve overall outcome” van Rhee said.

Changing Venues, Consistent Cutting-Edge Care The Myeloma Center’s clinic began in a small space on the first floor of the original Cancer Institute building and then moved to the UAMS Jackson T. Stephens Spine & Neurosciences Institute before the construction of its present eighth-floor location in the Winthrop P. Rockefeller Cancer Institute. Through the location changes, the treatment its patients have received has remained constant, incorporating advancements in treatment and research of myeloma and its related diseases.

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In 2011, the Myeloma Center treated its 10,000th patient and the next year, Myeloma Center researchers developed and validated genomic signatures for predicting response to treatment From 2014-2018, Gareth Morgan, M.D., Ph.D., a British researcher and physician with the Myeloma UK Research Centre at the Institute of Cancer Research in London, became director of the Myeloma Center. Morgan succeeded Barlogie. In 2018, van Rhee was named the Myeloma Center’s clinical director and Brian Walker, Ph.D., was named research director. A follow-up of patients treated 10 years earlier and prior in 2014 indicated that cure was achievable with patients with low-risk myeloma. Researchers and physicians at the Myeloma Center in 2016 provided the first evidence that genetics play a role in the development of bone disease in myeloma patients. That same year, updated data on long-term follow-up on TT-3 patients revealed an overall survival rate of 74 percent at five years and 57 percent at the 10-year landmark. This represented a significantly higher rate than the national average of 49 percent at five years, based on the National Cancer Institute’s SEER (Surveillance, Epidemiology, and End Results) program. Also in 2016, the Myeloma Genome Project was established in collaboration with Celgene Corporation and the Dana Farber Cancer Institute to compile the largest set of genetic data related to myeloma.

“The reason we can talk about cure at the Myeloma Institute is because of our intensive two- to threeyear treatment approach of induction, transplant, consolidation and maintenance.”

T. Glenn Pait, M.D., performs specialized spinal surgery at UAMS. 7


Blazing New Trails: The Myeloma Center Through the Years

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he Myeloma Center at UAMS is the international leader in the treatment and research of multiple myeloma and related plasma cell disorders. Patients travel from every state in the United States and from more than 50 countries to receive the latest and most promising treatments in Little Rock, Arkansas. This year, the Myeloma Center celebrates 30 years of clinical and research excellence focused exclusively on multiple myeloma and related conditions and is known worldwide for its high volume of patients and outstanding outcomes.

1993

Awarded first-ever Program Project grant for myeloma from the National Cancer Institute

1989

Introduced tandem transplant approach

First outpatient stem cell transplant

1991

Created prediction model for stem cell collection

1995

1996

Discovered “graft versus myeloma” effect in transplantation from donors

Introduced thalidomide as an anti-angiogenesis treatment

1997

The Myeloma Center’s team of experts has pioneered many advances in multiple myeloma and was the first to describe the disease as a curable cancer. Continually translating advances in the laboratory into breakthrough clinical treatments, Myeloma Center clinicians and scientists use advanced knowledge of cancer biology and the latest genomic tools to develop new and targeted treatments to increase survival, cure disease and improve the quality of life for patients around the globe.

1998

First to utilize PET scan for diagnosis and assessment of treatment response Second total therapy trial (Total Therapy 2) opened; 668 patients were enrolled Created SCID-hu mouse model for growing patient myeloma cells

2006

Identified seven molecular genetic subtypes of myeloma and their bearing on prognosis

2008 2002

Identified myeloma genes using GEP and developed gene-based classification of myeloma

First to utilize Gene Expression Profiling (GEP) to characterize disease Lambert Laboratory for Molecular Genetics was established

1999

Performed 5,000th stem cell transplant Discovered that the protein coding gene DKK-1 contributes to bone destruction

2004

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Total Therapy 4 and Total Therapy V open

Discovered that expression of 17 specific genes can be used to predict response to therapy First to use GEP for risk stratification and assignment to therapy

Total Therapy 5 is the first clinical trial for high-risk myeloma as defined by GEP Total Therapy 4 is the first clinical trial for low-risk myeloma as defined by GEP

Discovered that 14 genes are differently expressed by two subgroups of high-risk myeloma Gregory R. Pacheco Lab for Castleman Disease Research was established

2009

Nancy and Stephen Grand Laboratory for Myeloma Proteomics was established

2007

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The Myeloma Center is part of the UAMS Winthrop P. Rockefeller Cancer Institute on the main UAMS campus in Little Rock. The center encompasses outpatient clinical services, a dedicated infusion center, and basic and clinical research operations. The dedicated myeloma/ stem cell transplant inpatient unit is located in UAMS Medical Center.

Firsts The Myeloma Center was the first to: Perform transplants on an outpatient basis Use bone marrow transplants Safely transplant patients age 70 and above

Identify molecular subgroups of myeloma through gene expression profiling Develop distinct treatment strategies for highrisk and low-risk myeloma, as defined by gene expression profiling

Timeline of Firsts and Facts During the last three decades, the Myeloma Center has pioneered novel advances in diagnosing and treating myeloma and related diseases, including Castleman Disease, Waldenstrom macroglobulinemia, POEMS syndrome, and amyloidosis. The following are some of the breakthroughs and firsts at the Myeloma Center.

Introduce thalidomide as therapy

2017

2013

2011

10,000th patient treated

Developed and validated genomic signatures for predicting response to treatment

2012

Updated analyses of Total Therapy 1, 2 and 3 trials indicate success in using myelomaeffective agents up front to prevent outgrowth of resistant tumor cells that account for relapses

Total Therapy 8 trial opens evaluating the effectiveness of two alternating 3-drug combination treatment regimens following an autologous stem cell transplantation

2015

Determined that four genes predict high risk of progression from smoldering to active myeloma

Established the Myeloma Genome Project in collaboration with Celgene and Dana-Farber Cancer Institute, to compile the largest set of molecular profiling and associated with clinical outcomes data to develop a molecular classification system in myeloma Discovered eight new genetic variations in the human genome that could be linked to an increased risk of developing myeloma Provided the first evidence that genetics play a role in the development of bone disease in myeloma

10+ year followup indicates that cure is achievable for patients with low-risk myeloma

Established the Myeloma Genome Project in collaboration with Celgene Corporation and Dana Farber Cancer Institute to compile the largest set of genetic data related to multiple myeloma

Determined that infusion of large numbers of expanded Natural Killer Cells is feasible and safe

Updated data on long term follow-up on Total Therapy 3 shows an overall survival rate of 74% at five years and 57% at the 10-year landmark, representing a significantly higher rate than that of the national average of 49% at five years (10-year national data not available), based on the National Cancer Institute’s SEER (Surveillance, Epidemiology, and End Results) Program

2014

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Total Therapy 7 trial opens exploring the use of Anti-CD38 Monoclonal Antibody to Improve Progression Free Survival in Newly Diagnosed Myeloma

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Identified eight new genetic variants that could be linked to an increased risk of developing myeloma

The first book on Castleman Disease, developed by Frits van Rhee, M.D., Ph.D., is published

2018

2016

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Longtime Nurse Reflects on THREE DECADES of Myeloma Treatment at UAMS

Grace Allison, R.N., discusses myeloma treatment with a patients daughter

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race Allison, R.N., 53, has worked in the Myeloma Center’s inpatient unit for most of its 30-year history, joining the staff as a young nurse in 1991 when, at that time, most patients only survived two to three years.

Early days “When the myeloma program began, the two-bed units became individual ones, the doors were locked, and it was a ‘boy in a bubble’ approach,” Allison said. “We had to put on scrubs, gowns, masks and gloves before going in the rooms.” It was later determined the precautions didn’t affect infection rates. “It was daring but patients understood this was new and there were no guarantees. This was how we learned.” Through the years, the center offered patients both stem-cell transplants from their own stem cells and transplants from a donor. “That was all inpatient and we didn’t have a clinic or an outpatient side then,” she said, recalling when the harvesting program was established and she worked with the center’s founding director, Bart Barlogie, M.D. “He was phenomenal,” Allison said of Barlogie. “His approach was we’re a team and everything he learned, he taught us and the other physicians. One of the head nurses, Bonnie Jenkins, was incredible, too. She was in the trenches with us.” She recalls some of the physicians who practiced at the center through the years.

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“Dr. Michele Cottler-Fox revolutionized stem-cell collection with a process of reading blood tests and determining the exact time to begin collecting stem cells,” she said. “Then the outpatient treatment just exploded,” Allison said. “Transplants using the patient’s own cells are pretty straightforward and don’t always require an inpatient stay.”

Successes and Losses Through the years, patients have ranged from working men and women to titans of the business world, survivors of Nazi concentration camps, and foreign dignitaries. “Some did well and are considered cured while others were able to get additional time.”

Bright Future Ahead

“I see people now who've had their first chemo and transplant within months of being diagnosed where before it took much longer.”

“Today, we’re like a well-oiled machine,” Allison said. “I see people now who’ve had their first chemo and transplant within months of being diagnosed where before it took much longer. A mother of one young patient just cries and says, ‘I can’t believe this is here and how incredible you all are.’” Allison believes researchers and physicians are close to having the body’s own immune cells find and target the cancer. “I feel honored to be a part of the treatment and healing take place at the Myeloma Center,” she said. “This is such a special place.”

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Professor, Founding Member of UAMS Myeloma Center Reflects on THREE DECADES of Research

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oshua Epstein, D.Sc., a professor of medicine and director of Basic and Translational Research, has been a research professor with the Myeloma Center since its creation 30 years ago. He was studying the biology and therapy of myeloma even longer than that, beginning in 1986 at the University of Texas M.D. Anderson Cancer Center in Houston, Texas. The Israel native arrived in the United States in 1972 for postdoctoral work, studying the biology and genetics of aging at the Harvard University School

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of Medicine and Massachusetts General Hospital in Boston. While studying acute leukemia at Roswell Park Cancer Institute in Buffalo, New York, in 1986, he met Bart Barlogie, M.D., and was recruited to join him as an associate cell biologist in the Department of Hematology at M.D. Anderson. When Barlogie moved to UAMS, he asked Epstein to join him. “My wife and I came and we liked what we saw,” he said. “We liked that Dr. Barlogie and I had the chance to start something and shape it the way we wanted it to be.” myeloma.uams

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“Our most important accomplishment was the difference we made to patients,” he said. “It all started with the Total Therapy and stem-cell transplants. Even though, initially, people called Dr. Barlogie crazy, it was, and still is the leading therapy with the best outcomes,” Epstein said. “When we first arrived, the median survival rate was about three years. We were the first to use genomics to distinguish patients with high-risk or low-risk myeloma. For the low-risk patients the median survival rate went up to longer than seven years, and some patients are alive as long as 25 years after diagnosis.” “Another important accomplishment was obtaining the first-ever program project grant for myeloma from the National Cancer Institute in 1993. This and developing the leading therapy concepts in myeloma treatment put the myeloma program and UAMS on the map,” Epstein said Other accomplishments were drawing people from all over the nation and all over the world. In the late 1990s, the myeloma center also developed the first model for myeloma, putting patient’s bone marrow cells into human bones implanted in mice. This allowed scientists to study the growth of the disease, the effects of drugs, and the effect of the myeloma cells on the bones. That answered some basic questions of what are the cells that spread the disease (myeloma stem cells), the interaction of the tumor with the bone microenvironment and the development and progression of the disease. The model was used to myeloma.uams

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study various potential therapies. In research, UAMS showed that “mature” myeloma cells can, under some conditions, divide and replicate. On the clinical side, in 1997, the Myeloma Center introduced thalidomide, believed to be treatment that stops tumors from growing their own blood vessels, and that led to a huge breakthrough in treatment of myeloma and other cancers. In the mice, which cannot metabolize thalidomide, the drug had no effect, but after implantation of human tissue that can metabolize thalidomide, it became obvious that thalidomide metabolites are responsible for the drug’s effectiveness on myeloma. Epstein plans to retire in the summer of the 2019, but until then, his research into myeloma’s systemic effects on bone metabolism continues. “We know myeloma grows almost entirely in the bone marrow and in areas where blood cells are formed; but myeloma cells can cause changes in bone metabolism, anemia, and a compromised immune system. “So the question is how do these cells communicate? One mode of communication is that all cells excrete small particles called exosomes, packets containing proteins and RNA that circulate and are taken up by cells everywhere and can change the characteristics of cells.” While Epstein knows the exosomes communicate through interference between the normal genetic processes of the cells, he’s working to learn which genetic processes are being interrupted.

“Our most important accomplishment was the difference we made to the patients ... it all started with the Total Therapy and stem-cell transplants.”

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The Myeloma Center, with two clinical trials underway, is a leading center in treatment focusing on bi-specific antibodies — A Brief Primer Everyone carries viruses and the immune system has very important cells that help in the defense against such invaders. Bi-specific antibodies assist T-cells, white blood cells that circulate around the body scanning for cellular abnormalities and infections. One type of T-cell, T-lymphocytes, plays a central role in cell-mediated immunity and can be distinguished from other lymphocytes, like B-cells and natural killer cells, by the presence of a T-cell receptor in its surface. Bi-specific antibodies can either recruit the body’s natural immune cells to destroy the myeloma cells or activate a system in the blood to puncture and kill it. The bi-specific antibody, constructed by combining two different antibodies, works to harness the power of the T-lymphocytes. One half of the bi-specific antibody recognizes the tumor cell and the other half recognizes the T-lymphocyte cell, with the goal being one arm of the antibody captures the tumor cell while the other one attaches to the T-lymphocyte. Once united, the T-cell is activated to NKcell destroy the tumor cell. BMSC One of the two bi-specific antibodies in trial at the NKcell Myeloma Center focuses CD16 on an antigen (a protein Adhesion Elotuzumab ADCC capable of generating an immune response) that CS1 CS1 aids in the maturation of Enhanced activation state B-cells. This protein is also and cytolytic Elotuzumab function Myeloma Elotuzumab expressed by myeloma cells. CS1 cell The trial began last late last year and focuses on relapsed myeloma. ADCC: antibody dependent cellular cytotoxicity BMSC: bone marrow stromal cell NK: natural killer

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Partners in Care

Myeloma Center Partners with Others in New Combination Immunotherapy Clinical Trial

Baylor College of Medicine in Houston.

The Myeloma Center will soon begin a new clinical trial studying the use of specialized immune cells called natural killer (NK) cells in combination with a stem cell transplant to treat high-risk myeloma. Led by Clinical Director, Dr. Frits van Rhee, the Myeloma Center will collaborate with pharmaceutical companies Bristol-Myers Squibb, NantKwest, and Prometheus, all of which are contributing drugs that will be used in the trial. In addition, the Myeloma Center will work alongside the Center for Cell and Gene Therapy at the Baylor College of Medicine in Houston, where the immune cell products will be produced. “While T-lymphocytes need myeloma.uams

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to be taught to recognize, target and attack a virus or cancer cell, NK cells can immediately recognize an infected cell or tumor,” said van Rhee. “One of the issues with NK cells and tumor activity is that there is a strong signal to not attack the patient’s own cells, including the myeloma cells.” To overcome this, using a process similar to that used for stem cell collection, the patient’s NK cells are removed from the peripheral blood, frozen, and sent to Baylor College of Medicine in Houston for expansion with special, genetically modified, stimulator cells. Prometheus will supply a growth factor used during the NK expansion process. The

expansion supercharges the NK cells rendering them highly active and generating large number of cells. The patient’s activated NK cells are then returned immediately after a standard stem cell transplant. “We have observed in a previous clinical trial that activated NK cells lose their activity quickly after infusion. To overcome this issue, patients will receive injections with a strong NK cell stimulator drug provided by NantKwest, called an IL15 superagonist.” In a further improvement, an antimyeloma monoclonal antibody, elotuzumab, provided by Bristol-Myer Squibb will be administered. Elotuzumab tags the myeloma cells and guides the activated NK cells to their targets. Researchers from the Myeloma Center were partly responsible for the preclinical development of elotuzumab and participated in the first elotuzumab clinical trial in 2010. Researchers hope this multipronged immune approach will help to improve the outcome of high-risk myeloma patients. 15


UAMS Physician ESTABLISHES INTERNATIONAL GUIDELINES for Treating Castleman Disease

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rits van Rhee, M.D., Ph.D., a myeloma researcher and clinical director of the UAMS Myeloma Center, was lead author on a recently published paper that for the first time establishes treatment guidelines for patients with a form of Castleman disease, a rare disorder of the lymph nodes and related tissues. The guidelines are designed to improve outcomes in patients with a severe form of the disease called idiopathic multicentric Castleman disease (iMCD). It affects multiple lymph node areas and can cause night sweats, fevers, weight loss, anemia and in severe cases organ failure and death. “Treatment is challenging and outcomes can be poor since no uniform treatment guidelines exist, few systematic studies have been conducted and no agreed upon response criteria have been described,"

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according to the paper published online Sept. 4 in Blood, a weekly journal published by the American Society of Hematology. “International, Evidence-based Consensus Treatment Guidelines for Idiopathic Multicentric Castleman Disease” includes research and input from van Rhee and 41 other specialists, researchers and clinicians from 10 countries. “These guidelines are important because patients are at significant risk of death,” said van Rhee. “Until now, physicians have not agreed on the criteria for response to treatment of the disease.” van Rhee is regarded as an international expert on Castleman disease. He is professor of medicine and holds the Charles and Clydene Scharlau Chair for Hematologic Malignancies Research.

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iMCD has been treated with a wide variety of agents, including corticosteroids and chemotherapies. But many patients, especially those with a severe form of the disease, do not benefit from some of these treatments. The guidelines should assist physicians with selecting therapy and evaluating the response, thereby improving patient outcomes. Most recommendations were reached by consensus of the expert panel. They based the guidelines on published literature, review of treatment effectiveness in 344 cases, and expert opinion. They gathered through coordinated meetings of the Castleman Disease Collaborative Network, which van Rhee cofounded in 2012 with his patient David Fajgenbaum, M.D. Other UAMS researchers who helped with the project are Katie Stone, director of the Myeloma Immunotherapy Lab, and Amy Greenway, research associate with the Myeloma Immunotherapy Lab. Contributors hail from across the United States and Canada, the United Kingdom, Germany, Italy, France, Japan, Hong Kong, Norway and New Zealand. “The average oncologist may only see one patient with Castleman disease in his career,” said van Rhee. “A lot of progress has been made in the treatment of this disease and a lot of new information is available.” An international registry for patients with Castleman disease was established in October 2016 to collect patient outcomes to increase the evidence base for selection of future therapies. myeloma.uams

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Castleman disease occurs when an abnormal overgrowth of cells occurs in the lymph system, which serves as the main part of the body’s immune system. The disease, affecting 5,000 to 6,000 patients across the nation, was identified by Benjamin Castleman, M.D., in 1954. Van Rhee was previously the principal investigator on a worldwide trial with siltuximab, which led to the first FDAapproved treatment for multicentric Castleman disease and led to the approval of the drug by the European Medicine Agency. In early 2018, he released a book, Castleman Disease, as part of the Hematology/Oncology Clinics of North America series of clinics review articles published bimonthly by Elsevier Inc. Although Castleman disease was identified and named more than a halfcentury ago, until van Rhee’s book, no one had written a book exclusively about it. The 162-page hardback book features 13 chapters by 26 international physicians and researchers who specialize in the disease. Van Rhee wrote the chapter, “Treatment of Idiopathic Castleman Disease” along with Green, his research associate, and Stone, his lab director. He developed the idea for the book, co-authored the preface and the book along with Nikhil C. Munshi, M.D., associate director of the Jerome Lipper Myeloma Center at Dana-Farber Cancer Institute in Boston. Munshi was previously with UAMS.

“Treatment is challenging and outcomes can be poor since no uniform treatment guidelines exist, few systematic studies have been conducted and no agreed upon response criteria have been described.”

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UAMS Myeloma Researchers Link Size and Number of Focal Lesions as an Indicator of

Prognosis

Frits van Rhee, M.D., Ph.D., clinical director of the Myeloma Center

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esearchers with the UAMS Myeloma Center have connected clinical outcomes for patients with types of so-called focal lesions, which are areas of plasma cell accumulations within the bone present in many myeloma patients. The focal lesions are important contributors to the progression of the disease and are found through radiology imaging techniques such as MRI and CT-PET scanning. The team headed by Leo Rasche, M.D., Faith Davies, M.D., and Niels Weinhold, Ph.D., show for the first time the prognostic value of focal lesion size in myeloma. They reported these findings in the May 2018 edition of Blood, Journal of the American Society of Hematology in the article “The Presence of Large Focal Lesions is a Strong Independent Prognostic Factor in Multiple Myeloma.” Last year, the institute’s researchers discovered cancer cells can vary depending on their location, with the most aggressive tumors frequently only found in focal lesions. For the most recent study, which included 404 transplanteligible newly diagnosed myeloma patients, the researchers used diffusion-weighted magnetic resonance imaging (MRI) with background suppression to identify the presence of multiple large focal lesions as a strong predictive factor. “Using this novel MRI technique, we have identified for the first time a pattern characterized by multiple large focal lesions, which is strongly associated with poor myeloma.uams

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outcome,” said Rasche. “The pattern is independent from other established risk factors, and can be used as the entry criteria for riskstratified clinical trials,” he said of determining which patients have high-risk disease, which is more challenging to treat. They found that newly diagnosed patients with at least three focal lesions with perpendicular diameters of at least five centimeters or larger were associated with poor rates of progression-free survival and overall survival (median 2.3 to 3.6 years, respectively). This pattern, seen in almost 14 percent of patients, was independent of the Revised International Staging System for myeloma, gene expression profiling based (GEP70) risk score, or extramedullary disease, which occurs when tumors form outside the bone marrow in the soft tissues or organs. The number of focal lesions lost its negative impact on outcome after adjusting for focal lesion size, but the presence of at least three larger focal lesions was found to be a feature of high risk, and can be used to select therapy. “Currently either x-ray or PET-CT scan is used to assess disease for myeloma patients. Based on the results we present in this paper, we are firmly convinced that diffusionweighted magnetic resonance imaging with background suppression will become the new standard in the diagnostic workup of multiple myeloma,” said Weinhold.

“Based on the results we present in this paper, we are firmly convinced that diffusionweighted magnetic resonance imaging with background suppression will become the new standard in the diagnostic workup of multiple myeloma. ”

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Long-Term Myeloma Survivor Uses Photos, Humor to Inspire Cancer Patients

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n April 2001, I was photographing a young boy in my home studio and decided to bring my cockapoo, Buddie, to the photo session to make the boy laugh. When I bent over to pick up my little dog, I broke my collarbone. My doctor told me I had multiple myeloma… And so began 18-year myeloma survivor Kathy Kupka’s journey with cancer, as chronicled in the preface of her photo gift book, “Cancer

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is Ruff but There IS Treatment.” Published in 2014, it features humorous photos of more than 80 expressive canines along with captions listing the numerous side effects she and others with cancer experience. “It’s for the patients,” said the Leesburg, Virginia, resident. “I had a lady who recently said ‘I’ve just finished my treatment and I’m sending my husband over to get a

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copy of your book so my grandkids will know what I’m going through.’” Kupka, 69, worked as a secretary before following her lifelong interest in photography and switching careers in September 2000, mere months before she was diagnosed with myeloma. As a professional photographer, she began with children’s portraits before expanding to client’s dogs. Before publishing her book, Kupka produced humorous greeting cards featuring canines and retailing for $5 each. “I already had all these photographs in my collection and I just waited until I came up with just the right caption for an image,” she said. “I didn’t have one for night sweats so I went to my friend’s house and soaked down her poor little dog,” she recalled, laughing. In both her book and greeting cards, Kupka strives to be encouraging and compassionate but is also realistic. “I don’t put in here, ‘You’re going to make it’ because not everybody does.” She first published a hardback edition for $19.95 and later a softcover version for $12.95. She’s sold about 800 copies through several gift shops and online via Etsy and her own website. The idea for the book came about after she’d created a slide show featuring photos of dogs to illustrate her life’s journey. “When I came to the part about having cancer, its treatment and side effects, that’s when the audiences always started laughing.” In January 2001, Kupka noticed back pains she’d never had before. An orthopedic surgeon’s

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subsequent diagnosis of myeloma revealed lesions all over, including her hip and skull, broken ribs and crushed vertebrae. She was referred to an oncologist. “Here I was in Virginia and thinking, ‘Ok, where’s the best place to go for this disease I’ve never heard of? I’m thinking it must be somewhere like Washington, D.C., Baltimore, Maryland, or New York. No, the experts are in Little Rock, Arkansas. I was shocked when I learned the best place in the world to go for treatment of myeloma was here.” She arrived in the spring of 2001 and was treated by Guido Tricot, M.D., Ph.D. “I called Dr. Tricot on a Friday and he called me back that same evening,” Kupka said. “He said, ‘We’re talking cure here.’” At UAMS, she received stem-cell transplants in 2001 and 2002. Kupka took part in phase two of the Myeloma Center's clinical trials and was given thalidomide. She went into remission after her first transplant and after her second, was on maintenance for two years with chemotherapy and steroids. Now disease-free, Kupka visits annually with Frits van Rhee, M.D., Ph.D. “Anytime anyone asks me to talk to someone who’s been newly diagnosed, I always highly recommend they come here. You feel confident when you’re here. It’s a research center and they are the experts.” To learn more about Kupka, visit www.kathykupka.com. Visit http:// www.cancerisruff.com for more info on her book.

“Anytime anyone asks me to talk to someone who's been newly diagnosed, I always highly recommend they come here. You feel confident when you're here. It's a research center and they are the experts.”

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THE

IMMEASURABLE IMPACT OF A LEGACY GIFT The brave patients who fight to regain their health as they battle myeloma and the passionate caregivers committed to supporting them work together daily. United, they discover pathways to extend life through innovative personal medicine, tailored to the unique genomic and individual biomedical profile of each patient. At the Myeloma Center, the patients, who come from all walks of life and all corners of the globe, find both compassion and inspiration in the dedicated effort to place their cancer into remission and perhaps a cure. As a patient’s health improves, they and their families often desire to give back to the Myeloma Center and to assist fellow patients who follow them in the same fight. For many patients, regardless of their current financial capacity, the best opportunity to make such a philanthropic commitment is through a planned gift. This is a personal commitment that can be made either in the patient’s lifetime or 22

scheduled to coincide with their passing. It can be included in a final will and testament, honoring the clinicians and researchers who treated the patient or it might be a present-day gift to be paid at a later date, recognizing a family member through establishing an endowed research chair or memorial fund. A planned gift to the Myeloma Center, no matter the form it takes, can be enhanced by certain tax advantages currently available to the donor. It also arranges the donor’s philanthropic intent of a legacy to leave to future generations and allows the donor to decide, in advance, how their philanthropic interests will be realized once they are no longer here to direct them. In the end, a planned gift represents the donor’s commitment to a society in which each of us gives to benefit the other – where memory, word and deed is carried forward through future generations, an honored tradition that makes the world a better place for our having passed through it. myeloma.uams

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MAFb Protein Confers Intrinsic Resistance to Proteasome Inhibitors in Multiple Myeloma A new publication in BMC Cancer July 2018 Primary Author: Ya-Wei Qiang, M.D., Ph.D. Myeloma patients in the MAF proteins subgroup, with high expression of the C-MAF and MAFb genes, are high risk with poor survival and resistance to treatment with proteasome inhibitors (PI), including bortezomib (Velcade). In 2013, Qiang focused on the reasons underlying the resistance of PI therapy. She discovered that that PI allowed the C-MAF protein to remain stable and accumulate in myeloma cells. The high

amounts of C-MAF protein, in turn, prevented the drugs from having any effect on the patient’s disease (Qiang YW, Ye S, Chen Y, Edmonson R, van Rhee F, et al. Blood. 2016;128:2919–30.). In 2018, Qiang confirmed that MAFb has a similar mechanism as C-MAF resistance to PI. Qiang has submitted several grants to research novel potential targets on the MAF family, which she believes may be key to a targeted therapy that might increase survival in these high-risk patients.

A high-risk, double-hit, group of newly diagnosed myeloma identified by genomic analysis A new publication in Leukemia July 2, 2018 Primary author: Brian Walker, Ph.D. Newly diagnosed high-risk multiple myeloma needs new treatment strategies to improve outcomes, but identifying these patients is challenging and there is no uniform definition in clinical practice. A comprehensive, genomewide analysis of data from 1,273 newly diagnosed patients in this research, part of the ongoing worldwide collaborative Myeloma Genome Project, has defined two DNA drivers of aggressive clinical behavior and identified “double-hit” myeloma, a new genomically defined high-risk subgroup of patients who have extremely poor outcomes (18-month estimates of progressive-free survival and overall survival of 39 percent to 48 percent).

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These patients have one of two abnormalities - inactivation of two genetic sequences in the TP53 gene (which, when working properly plays a crucial role in preventing cancer) or multiple copies of the CKS1B gene along with an International Staging System score of 3. These patients, representing 6.1 percent of newlydiagnosed patients, have poor prognoses and should be considered for novel therapeutic approaches. “In our study for the first time we describe that high-risk myeloma could be hidden somewhere in the skeletal system and not necessarily be present at the iliac crest, which is on the upper, outer edge of the pelvis. There’s only one institution in the world that routinely biopsies focal lesions, and that’s at UAMS,” Rasche said.

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Jessica, Joey, Lonnie, Bailey and Jodi (front and center).

Myeloma Patient,

Now in Remission,

Bounces Back After Relapse

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hen Joey McNeill of Raleigh, North Carolina, was diagnosed with high-risk myeloma in September 2006, the future looked bleak for the husband and father, then 47. High-risk myeloma is the one of the most challenging forms of the rare blood cancers to treat and cure.

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At the time of his diagnosis a little more than 12 years ago, he and his wife Lonnie’s three daughters, Jessica, Jodi and Bailey ranged in age from 15-8 years old. Since then, he’s been through the front lines of treatment, relapsed and was retreated. Today, nearly six years after his relapse, he is doing well. myeloma.uams

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McNeill, in the midst of visiting several treatment centers, was at UAMS when the aggressiveness of his disease led him to seek treatment. While visiting Duke University Medical Center shortly before coming to the Myeloma Center, McNeill had a PET scan that showed 95 lesions. Just ten days later, another scan at UAMS revealed the total had risen to 115. “My presentation was so dire, they encouraged me to make a decision quickly to begin treatment,” he recalled of the physicians at UAMS. “I had visited Duke, which was much closer to home, but their recommended treatment was not nearly as aggressive,” McNeill said. “The competence and the confidence expressed by every person I came into contact with at UAMS, from the insurance intake person to the doctor, convinced us this was the place to be.” He began treatment at UAMS, enrolling in the TT 3 phase of the Total Therapy treatment program. “I started with lenalidomide (revlimid), thalidomide and dexamethasone and had to immediately start wearing the bag,” McNeill said of the black bag slung over his shoulder from which chemotherapy was pumped into him 24 hours a day. He wore the bag for a couple of weeks as part of the consolidation leading up to harvesting his stem cells. When stem cells were being regenerated, McNeill received shots twice daily. “That period was very painful,” he recalls. “It was a brutal year. At the time, UAMS was the only place in the world that considered the tandem stem cell transplants the standard of care.” As the winter holidays neared, McNeill wanted to go home for Christmas but his physicians here strongly advised against doing so. “Dr. Bart Barlogie, the center’s director, was brought in and said, ‘Cancer does not take a holiday. If you go home for Christmas, there myeloma.uams

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may not be any more Christmases for you.’” McNeill heeded the physician’s advice and remained in Little Rock for his treatment. Following his transplants, for five years, McNeill continued his weekly maintenance therapy at home but in early 2012, his disease morphed into a different version and he relapsed and was treated with chemotherapy. In late 2012, Frits van Rhee, M.D., Ph.D., asked McNeill, then recovered from his relapse, to consider having a salvage stem cell transplant, which would require he come back for another month of treatment. “I certainly had reservations about doing it but he explained that when your cells are healthy is the best time to save them if the disease returns and they’re needed later,” McNeill said. “With the salvage transplant in early 2013, I was in and out in three weeks. What’s giving up a month of your life? It’s nothing. I decided it was my best bet for longevity.” In August 2017, he went into total remission and was taken off chemotherapy for the first time in 13 years. Today, he remains in remission and is no longer under the care of his local oncologist. Instead, he visits the Myeloma Center in Little Rock twice a year, has blood samples taken monthly and has experienced no side effects from all the chemotherapy he’s received. “When the cure comes – and it will come – it only makes sense that you be alive and ready to receive it,” McNeill said. He encourages others diagnosed with myeloma to also seek treatment at the Myeloma Center. “When you’re diagnosed, you only get one chance to hit it hard the first time. UAMS has the best myeloma team in the world, period. Everyone in the waiting room there has the same disease and every person working there is so knowledgeable about it. You need to take your best shot the first time you seek treatment and without a doubt, that is found at UAMS.” 25


Stran gers

Into the Arms of by Sara Lukinson

Sara and Karen Lukinson

Editor’s Note: This non-fiction essay was originally published in Intima: A Journal of Narrative Medicine, www.theintima. org,

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hot summer day in 2014, when I wished I could have been going anywhere but there, I flew to Little Rock from New York

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City for the second time in two months and was surprised to be picked up by a smiling woman I didn’t know named Pam. “How was your trip,” she asked, “Your sister is excited to see you.” I couldn’t wait to see Karen but was thinking, how is this ever going to work? myeloma.uams

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We didn’t know a soul in Little Rock or anyone who did, except now apparently there was Pam. As much as I didn’t want my sister to have chosen this doctor and cancer clinic instead of staying at home with her oncologist in Washington and as much as I worried about how alone this would make her, this was Karen’s battle and on this decision, my usually reticent, hesitant sister insisted. We had been lucky, finding her a sunny one-bedroom apartment in a complex belonging to the Guesthouse motel. It shared with the motel a courtesy van that drove patients to and from the nearby clinic all day, every day, and any place within three miles. It also shared the services of the clinic’s visiting nurse, a perky cherub named Maria Jolly. An English expat, Maria and her husband, also a nurse, had visited Little Rock a few years back and stayed for the weather. Three mornings a week she extracted blood samples, cleaned chemo parts, circled the what-if questions, and left behind the sound of her laugh, as free and easy as a child’s. The morning after my arrival, there was a knock on the door and Karen’s eyes lit up. “That’s Maria.” They nattered away while Maria checked for signs of infection under Karen’s implanted port, until it almost seemed as if the illness was a pretext for their visit. In the days to come, there would be Sunday picnics in Maria’s backyard and rides in their blue convertible. Karen’s time in Little Rock went from weeks to months. I’d fly down riddled with anxiety, afraid for her isolation, imagining her alone in the waiting rooms, and there would be my sister introducing me to the nurses and orderlies. The young geneticist. The motel owners and the woman who fitted the free wigs. Her doctor and his wife often took her out to dinner. Wine, talk, a toast to optimism. When I showed up, there was a standing invitation for “the sisters” as they called us.

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I never sensed pity in their kindnesses or the formality of duty, but rather an affection born of an eagerness to love her for who she was, beneath the wig and the pallor: a once reserved woman with a hope in her eyes. Fate had pulled the threads of a new narrative, and Karen had fallen into the arms of strangers. Pam, the woman who would meet me every time I visited, was a volunteer through her church who met Karen after a procedure required a relative or friend take her home. She asked Karen if she wanted to stop off for gelato and they discovered they were both interior decorators and talk turned to florals, stripes and paint colors. They’d later poke around fabric stores or craft fairs, trading tips. Then there was the courtesy van, which looked like a common, white nine-seater, but the friendly familiarity of the drivers turned it into something more like a Cinderella coach, that came when you called, a smile and a hand waiting to help. All the drivers were courteous, but Kevin seemed to take in the most. One night Karen went to a dinner honoring her favorite nurse but wilted before dessert and called the van. Kevin was on duty. When they arrived back at her apartment, he woke her, walked her up the stairs and waited until she was safely inside. The next time he saw me, he handed me his personal cell number, “just in case.” Karen’s residence in Little Rock continued into the following year. I’d stay for two weeks at a time, guilty every time I left. Yet each time I saw that something else was at work. Karen stood in the light on her own. She was taking on her cancer with both hands fully extended, and what these onetime strangers were giving her was a life to wrap her arms around. Karen’s illness was between her and her doctor, but her laugh, her music, her days were between her and them. An effortless back and forth, without any shred of artifice. In the midst of all >>

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“I never sensed pity in their kindnesses or the formality of duty, but rather an affection born of an eagerness to love her for who she was ... Fate had pulled the threads of a new narrative, and Karen had fallen into the arms of strangers.”

that was uncertain, what was certain was them. Fourteen months passed and things seemed to stabilize. Then, the cancer numbers spiked. Karen was checked into the hospital and I moved in. One afternoon, a circle of doctors walked in, and the word hospice was spoken so quietly you hardly noticed it reversing the direction of your fate. The first thing that happens is that numbness takes over. The edges of the world blurred. I don’t know where love comes from or why people behave the way they do, but a communion of people was standing at our door, without having been asked, without asking anything in return. Maria was no longer part of Karen’s medical team, but she came, gently, knowingly guiding us into the unknown and hospice. Pam took clothes home to wash and sat with me as I talked to the funeral home and signed the papers. The motel owner and van drivers asked to visit. They accompanied Karen like a flock of birds in formation, turning whichever way she had to go. The head nurse from the clinic came after work. Karen’s doctor texted every day, the ping went off on her iPhone. “I’m thinking of you.” She wrote him back, “I regret nothing.”

We were at the hospice just over a week when my sister passed away, and I walked out of the room, encased in grief. Then, the flock turned toward me. Pam bought me black ribbon, which we fixed with a pin to my shirt, a Jewish custom and without which, for reasons I can’t explain, I couldn’t leave the hospice. Her doctor wrote me in tears. Kevin packed up the room and drove me to Maria’s where a key waited under the flowerpot. That evening, as Maria tucked me into a freshly made bed, she told me Karen had asked them to take care of me. “Stay with us as long as you like.” The next day, Pam drove me to the airport. I was eager to go home. Friends had planned a memorial service. But a few days later I realized that Karen and I had been home the whole time.   The reality was, I knew I’d never see Maria or Kevin or Pam or anyone from Little Rock again. Except in my mind’s eye. Next to my sister, her arm around her new friends. How she shined. What had begun as acts of small sharing turned into a state of grace. How they came out of nowhere and never let go of her or me. I see them still even as they fade back into the distance, strangers I once knew. Kindness in the dark, in the forever.

Sara Lukinson of New York City is a three-time Emmy award winning writer and documentary filmmaker best known for her biographical films of artists, including the films she produced for the “Kennedy Center Honors” for thirty years. Her work has been featured on network specials, PBS and HBO. Her personal essays have appeared in the New York Times, the Washington Post, and Nexttribe. She is currently teaching a writing course at New York University. ©2018 Intima: A Journal of Narrative Medicine

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Patient Finds Humor in

Hairy Situation

Eric and Mary Ruschky

“My primary care physician called me in and asked me if I knew a good oncologist,” said Eric Ruschky, 70, of Columbia, South Carolina. Ruschky recently recounted his 2003 diagnosis of smoldering multiple myeloma, a precancerous form of the cancer of plasma cells in the bone marrow. “Turns out, I knew a brilliant one who lived down the street from me.” myeloma.uams

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Ruschky, now a retired assistant U.S. attorney, was later diagnosed with monoclonal gammopathy of undetermined significance (MGUS) and in fall 2004, his oncologist William M. Butler, M.D., scheduled an appointment for him at the UAMS Myeloma Center where he’s been a patient ever since. During his first year of treatment under the care of Guido

Tricot, M.D., Ph.D., Ruschky underwent chemotherapy treatments and had tandem stem-cell transplants. Tricot practiced at the UAMS Myeloma Center from 2001 to 2007, during which time he and his colleagues pioneered the use of a treatment technique that increased the median survival rate for newly diagnosed patients from 2 ½ years to 10 or more. During his first round of chemotherapy, Ruschky almost, but not quite, dodged losing his hair. “I had my treatment and was doing well but none of my hair had fallen out,” he said. “I began to think ‘Maybe that’s not going to happen to me.’” Heading home to South Carolina, he made it to Atlanta; it started coming out in the shower the next morning. Arriving home, it was time for him to go shopping for a new vehicle. “I went to my wife’s friend who worked >>

“I had my treatment and was doing well but none of my hair had fallen out, I began to think 'Maybe that's not going to happen to me.”

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“People at the Myeloma Center have gone out of their way to make our visits there as pleasant as possible.”

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at a car dealership and told him, ‘If you don’t give me a good deal on a new car, I’m going to pull my hair out,’ and grabbed a handful of hair in each of my hands and I pulled out two fistfuls of hair.” “And I cried,” added his wife, Mary. “To me, the loss of hair is a badge of courage. I wasn’t ashamed of being bald,” Ruschky said. “I’ve encountered other cancer patients with a bald head and when I do, I tell them ‘Been there, done that’ and give them a fist bump. It’s a bond I have with them.” Ruschky has retained the sense of humor he first displayed at the car dealership and was further encouraged when, back in Little Rock for his second round of chemotherapy, a friend sent him an outlandish wig. He sports the spiky reddish-golden wig on his annual visits to UAMS. Through the years, gift shop employees helped him embellish his look, adding accessories like

a feather boa or a pair of sunglasses. Visiting Scotland in 2009, he came across a second wig he brings with him for variety. Meanwhile, Mary reaches out to those at the Myeloma Center who have cared for the couple through the homemade sixingredient bread she’s been making for 30 years and brings with her every visit. During the times when her husband was undergoing treatment and their stays here were longer, she’d bring the starter with her and make it once a week to share with employees as a unique expression of gratitude. “People at the Myeloma Center have gone out of their way to make our visits there as pleasant as possible,” Ruschky said, adding that the same warm hospitality is also found among Arkansans outside of UAMS. Like John and Priscilla Youngblood of Little Rock, originally from South Carolina, and their

daughter Sherri, who’s a registered nurse at UAMS, who opened their home to the Ruschkys during Eric’s checkups. Others extending hospitality to the Ruschkys include then-Arkansas Gov. Mike Huckabee and his wife, Janet, who met the Ruschkys at a book signing in Columbia and hosted them in the Governor’s Mansion during Eric’s annual checkup in December 2005 and tennis pro Raul Bermudez who Mary, an avid tennis player, could call on for a match while in town. “He’s just another part of Little Rock,” said Ruschky of Bermudez. “The love, compassion and friendship we’ve found here has been amazing.” Eric’s treatments ended in July 2005 and he is now in near-complete remission. And when he meets other myeloma patients, he recommends they come to UAMS for treatment.

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RIDE Myeloma Center's

for Research 2018

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Octogenarian Completes Second

Ride for Research

for UAMS Myeloma Center

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on Gephardt of North Little Rock, loves to cycle. At 81, he’s not letting his age or his diagnosis put the brakes on any of the miles he covers on the 16-speed Litespeed he bought in early 1997 to ride across the United States. Three years ago, after his physician found extra protein in his blood during a routine check-up, a

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bone marrow biopsy led to being diagnosed with a condition called lymphoma in the bone marrow as well as monoclonal gammopathy of undetermined significance (MGUS). MGUS is non-cancerous but could progress to myeloma, a cancer of plasma cells in the blood. “I got rid of the lymphoma after eight months of chemotherapy.

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With the MGUS, we’re just waiting and watching right now,” he said. Regular check-ups are essential because every year about 1 percent of people with MGUS develop multiple myeloma. When Gephardt developed an infection in his right foot in late 2016, his physician recommended he come to UAMS where he was seen by orthopaedic surgeon, Corey Montgomery, M.D., and myeloma physician Sharmilan Thanendrarajan, M.D. No additional cancer was found. While at UAMS during the summer of 2017, Gephardt learned about the inaugural Ride for Research, held in conjunction with the Big Dam Bridge 100 ride, and signed up for it. Last year, at 80, he rode 27 miles in the Ride for Research, averaging 11 miles an hour. He completed the 26-mile course during this year’s ride. “The first year of the Big Dam Bridge 100 ride in 2006, I rode the full 100 miles but haven’t ridden that far since,” he said, adding that he has completed 68 miles a few times. Before becoming a patient at the Myeloma Center, Gephardt had been to UAMS to work on the computer system years ago when he worked for IBM. He retired in 1996 and shortly afterward took up cycling. Two years after retiring, he tackled one of the items on his bucket list and rode across the nation with the American Lung Association’s Big Ride Across America in memory of his older brother who had battled

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lung cancer and died in 1995. After raising $6,000 in donations, he and the other cyclists rode the 3,339mile ride from Seattle, Washington, to Washington, D.C. Gephardt, riding an average of 83 miles a day, completed the ride in 48 days with 40 days on the bike and eight days of rest. Gephardt’s wife, Dian, gave her blessing for his adventure. “All she asked for in return was a phone call every day,” he said, adding that before the popularity of cell phones, her request could prove challenging. “Some days it was harder than others to find a phone, but I succeeded,” he said, chuckling. During his journey, he also sent postcards from across the country daily to the three grandchildren he had at the time. In the fall of 1988, he rode through Vermont with friends. While he also owns a mountain bike, it’s his road bike he tries to ride at least a couple of times a week. “About 95 percent of the riding I do today is along the river trail,” he said. “It’s a pleasant place to ride.” “I’m hoping it doesn’t get any worse,” he said of his diagnosis of MGUS. “It’s still stable and not at a high enough level to take treatment.” Why, in the midst of battling his own cancers, was taking part in Ride for Research a priority for Gephardt? “It’s so important to let others know about myeloma, its related diseases, and to raise awareness of them.”

“It's so important to let others know about myeloma, its related diseases, and to raise awareness of them.”

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Nursing Student Interested in Research Cycled for it via

Ride for Research

Lynn and Bethany Reinbolt

U

AMS nursing student Bethany Reinbolt, 31, was not familiar with myeloma before she read about the UAMS Myeloma Center’s Ride for Research set for Sept. 29. “I had to look it up,” Reinbolt said of the rare cancer of plasma cells in

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the blood that develops in the bone marrow. But she was familiar with endurance sports. The challenge of riding the full 100 miles of the race, called a century, drew her in. The fact that it benefited medical

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research at UAMS made it all the more appealing. “I’d just gotten new bike, a Specialized Ruby SL4, and I’ve always loved endurance sports so I Googled ‘How long does it take to train for a century?’ and the answer that came back was eight to 10 weeks so it was perfect timing.” The Riverside, California, native who grew up Searcy was looking for a way to meet other people at UAMS who participate in endurance sports. “I’m also interested in medical research, which the proceeds from this ride supports, so it all fit together,” she said. Reinbolt, who ran a 50-mile run in December 2017, said the longest distance she’d ridden before Ride for Research was 82 miles. She trained three or four times a week on her bike and did cross-training with activities like running or yoga the other days. Prior to the ride, she received some advice from Mark Hagemeier, a cyclist and managing associate general counsel with the UAMS Office of General Counsel. He suggested she ride the hills west of Little Rock on the 100mile course prior to the event. She did and appreciates Hagemeier’s advice. “They were intense,” she said the terrain. “It actually wasn’t that bad but I knew it would be worse during the actual ride. It was a confidence builder for sure.” Reinbolt completed the full 100 miles and did it within her personal goal of seven hours. Prior to the ride, during an earlymorning ride with her dad Lynn, 66,

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who rode the 68-mile course with Ride for Research, Reinbolt had a startling experience as they cycled for a short stretch along Highway 36 in Searcy at sunrise. “The driver of a passing SUV had the sun in his eyes and didn’t see me,” Reinbolt said. “His side mirror brushed up against my arm and it was pretty scary. I’m just glad it wasn’t worse.” Adventure is nothing new for Reinbolt. After graduating from Eternity Bible College in Simi Valley, California, she spent three years living and working in Nepal on a research visa where she researched root causes of human trafficking to implement prevention measures. “The need for education on basic health care issues like handwashing was so great, combined with learning about all the deaths of women who were giving birth, many of which were preventable, led me to return to Arkansas and pursue a nursing degree,” Reinbolt said of her experience in the South Asian country. She hasn’t decided yet how she will use her bachelor’s degree in nursing, just that she help others, either by practicing or through research. Reinbolt enjoyed being a part of the second annual Ride for Research and beginning the ride with her dad. “Some of my earliest memories from my childhood are of being on the back of his bike in my little seat. “The ride is fun and raises awareness of myeloma,” Reinbolt said.

“The need for education on basic health care issues like handwashing was so great, combined with learning about all the deaths of women who were giving birth, many of which were preventable, led me to return to Arkansas and pursue a nursing degree."

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Non-Profit Organization US Postage

PAID

Little Rock, AR Permit No. 1973

4301 West Markham #816 Little Rock, AR 72205-7199

the scenes Shmuel Yaccoby, Ph.D. Shmuel Yaccoby is a professor of medicine and associate professor of physiology with the UAMS College of Medicine. He earned his doctorate in endocrinology from Hebrew University of Jerusalem. He joined UAMS in 1999 as a postdoctoral fellow and later became a faculty member. At the Myeloma Center, his research is focused on the role of the microenvironment in tumor progression, myeloma bone disease, metastasis and tumor cell plasticity. His laboratory is specialized in establishing clinically relevant experimental models for studying various aspects in myeloma pathogenesis. Dr. Yaccoby’s team is cultivating myeloma cells from patients with MGUS and asymptomatic myeloma, to study the role of bone marrow microenvironment in promoting progression of benign disease to overt myeloma. His laboratory also works with others at the Myeloma Center to identify and char acterize the myeloma initiating cell using experimental models. Cody Ashby, Ph.D. Cody Ashby is an assistant professor in the Department of Biomedical Informatics in the UAMS College of Medicine. Ashby earned his master’s degree in computer science and doctorate in molecular biosciences from Arkansas State University in Jonesboro, Arkansas. While there, his research included approaches in protein structure prediction, proteinprotein alignment, and de novo transcriptome assembly. He served his postdoctoral fellowship in bioinformatics at the University of Arkansas for Medical Sciences. He has a broad background in bioinformatics, with specific focus and training in the areas of protein structure, co-clustering methods, and next-generation sequencing analysis. His research at the Myeloma Center includes the study of chromosomal structural variations, mutations, and sequencing data through the development of custom software tools.

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Myeloma Magazine Spring 2019  

Myeloma Magazine Spring 2019  

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