A PUBLICATION OF
UAMS MYELOMA INSTITUTE
SPRING 2018
LONG-TERM SURVIVORS
CELEBRATING PATIENTS OF THE MYELOMA INSTITUTE
“We strive to cure myeloma and treat it as if it is curable. And why not? Other cancers are curable.”
A Cure for Myeloma Defined For years, it’s been said that myeloma is an incurable disease that undergoes multiple relapses until it eventually becomes resistant and the patient dies. When I started treating myeloma years ago, there really was no cure and many times patients died within months. The average survival was said to be 2 ½ to 3 ½ years. But in the last decade, we’ve seen a huge improvement in outcomes driven by our program at the Myeloma Institute. We strive to cure myeloma and treat it as if it is curable. And why not? Other cancers are curable. Trying for a cure for myeloma 15 years ago was probably ill-judged because the tools for achieving remission were not yet available, but now we have many we can use in a standardized fashion in blocks of treatment until the patient enters remission and we keep them there. So what is the definition of cure? To me, it means no evidence of disease, a normal life, and a prolonged life free of relapses that doesn’t significantly differ from other people of the same age. Today, to a large extent, we can achieve cure; especially with patients diagnosed with low-risk myeloma. If we get them into remission, the chances they will remain well 10 to 15 years later is about 70 to 80 percent. With most of our patients in their 60s or 70s when diagnosed, those additional years equal a pretty normal life. Once cure is achieved, survivorship - lifestyle issues, eating well, exercising regularly, maintaining a healthy heart, and, above all, watching for second cancers that seem to be an increased risk for myeloma patients – moves to the forefront. Cheers and kind regards,
Gareth Morgan, M.D., Ph.D. Director, UAMS Myeloma Institute 2
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Making Great Strides with Strategies for Achieving Cure . . 4 SPRING 2018 EDITOR Linda Haymes CREATIVE DIRECTOR Mindy Stout PHOTOGRAPHER Johnpaul Jones
Healthy Diet is Key for Myeloma Survivors . . . . . . . . . . 8 Working to Rebuild Strength and Endurance . . . . . . . . . 9 Clinical Trials – A Brief Primer . . . . . . . . . . . . . . . . . 10 Partners in Care . . . . . . . . . . . . . . . . . . . . . . . . . 11 Clinical Trial Brings Remission for DeValls Bluff Woman . . 12 Myeloma Awareness Month . . . . . . . . . . . . . . . . . . 14 Two Patriarchs use Bonus Years to Guide, Love and
DIRECTOR UAMS Myeloma Institute Gareth Morgan, M.D., Ph.D. INTERIM CHANCELLOR University of Arkansas for Medical Sciences Stephanie Gardner, Pharm.D; Ed.D. Myeloma is published twice a year by the Myeloma Institute, University of Arkansas for Medical Sciences 4301 W. Markham St. #816 Little Rock, AR 72205 Phone: 501-526-2873 myeloma.uams.edu
Lead Each of their Families’ Future Generations . . . . . . 16 Publications . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Myeloma Patient Crafts Quilt to Express Thankfulness for Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Cancer’s Long and Winding Road: From Awe-full to Awe-mazing . . . . . . . . . . . . . . . . 23 Myeloma Institute’s Ride for Research . . . . . . . . . . . . 25 UAMS Myeloma Institute Team Goes the Distance to Fight Cancer . . . . . . . . . . . . . . . . . . . . . . . . . 26 Conway Cyclist Rides in Memory of Dad . . . . . . . . . . 28 Loved Ones Ride for Research for ‘Team Mom’ . . . . . . . 30
On the Cover: The individuals in the collage represent the everincreasing number of patients of the Myeloma Institute who have survived long-term. Their number continues to increase. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Steve Engstrom of Little Rock, Ark. Ken Stoll of North Little Rock, Ark. with wife Sandy Terry Arnholt of Green Valley, Ariz. Ruth Davis of Washington, D.C. Don Gary of Lewisville, Texas Chuck Cordell of Pinehurst, N.C. Lucia Dougherty of Coral Gables, Fla. Donna Atkison of Springfield, Mo. with husband Gary Carl Guenther of Wilmington, Ohio David Sutton of St. Petersburg, Fla., with son Benjamin
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Myeloma Institute Making Great Strides with Strategies for
Achieving Cure
Faith Davies, M.D., deputy director of the UAMS Myeloma Institute, and Gareth Morgan, M.D., Ph.D., director, believe research is key to the advances the institute has experienced. “Without research, none of these advances would have happened,” he said.
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sked what being a longtime survivor means to him, Ken Stoll, 74, doesn’t hesitate: “Very blessed,” said the North Little Rock resident diagnosed nearly 27 years ago in May 1991.
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In receiving his second stemcell transplant at the Myeloma Institute in April 1992, he became the world’s first to do so as an outpatient. He’s filled his additional years with more living and loving.
“I got to see my three children graduate from high school and college and attend all their weddings,” Stoll said. “And now I get to enjoy my seven grandchildren; not to mention getting to spend
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another nearly 27 years with my lovely wife, Sandy.” Stoll visits the institute for annual check-ups and a blood draw every four months. He says he’s doing fine. Is he cured of myeloma? “I believe that I am,” he said. While Stoll and the institute’s other long-term survivors go about their lives, physicians and researchers move forward with the latest advancements. Once cured of myeloma, patients need to remain vigilant of other health concerns. “Myeloma patients are at an increased risk of other conditions,” said Gareth Morgan, M.D., Ph.D., director of the Myeloma Institute. “Those who’ve had chemotherapy need to be monitored more carefully. And cancer changes the likelihood of developing osteoporosis or hypothyroidism.” Patients should follow the health guidelines recommended for the general public from immunizations to annual exams. As a circulating cancer rather than a solid one, myeloma creates additional challenges, said Faith Davies, M.D., institute deputy director and director of the Phase I clinical trials program. “The longer you stay in remission, the more likely you are to be cured but there’s always a small chance of relapsing because of the
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Longtime survivor Ken Stoll and his wife, Sandy, at home in North Little Rock. In 1992, Stoll became the first patient in the world to receive a stem-cell transplant on an outpatient basis.
evolution of the cells,” Davies said. One stray cell, hiding and dormant, can wake up, start growing again and lead to relapse. “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,” said Davies. “Doctors who don’t take the curative approach and aren’t as intensive may get the patient into remission, but it doesn’t seem to be as deep or last as long. That’s just controlling the disease, not curing it.” In the past, patients couldn’t remain on therapy for very long because the
side effects were too toxic. But improvements have been made during the last decade. Living longer For patients who have the type of myeloma categorized as low risk, the chances of surviving 10 years is 50 to 70 percent, Morgan said. At 10 years, the survival curves start to match those of a patient at the same age in the general population, so reaching 10 years is considered an early marker of long-term cure. “We’re trying to work out other surrogate markers,” Morgan said. The institute uses the depth of response, determined by sensitive tests searching for tumor cells in the bone marrow, as an early marker for long-term outlook.
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“One of the key factors of our success is being able to keep track of patients here for nearly 30 years. Because the patients have been so well characterized, researchers can review the data and see the results after changes were made or new drugs were added.”
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Curing patients with the type of myeloma categorized as high risk is more challenging. These patients are treated with a different strategy. The old protocols were the Total Therapy 1 through 6 clinical trials, with TT-5 being for high-risk patients. “Our TT-5 protocol used to get 25 percent of high-risk patients to five years of survival,” said Morgan. He said there are now some high-risk patients still alive eight years after beginning treatment. For high-risk patients, it’s essential to reach a complete response. He hopes the new protocol underway – the Total Therapy 7 clinical trial for high-risk patients — will double the success, getting 50 percent of patients to five years. TT7 adds in daratumumab (DARZALEX), a monoclonal antibody that works with the patient’s immune system and carfilzomib (KYPROLIS), a secondgeneration proteasome inhibitor that blocks the activity of enzyme complexes or proteasomes. Evolution of treatment Morgan credits recent successes to new drugs and how they, along with older ones, are used. “Instead of going for the highest doses of chemotherapy, we’ve realized that by splitting the doses and using them sequentially and closer together, you can better control the disease and get more than 95 percent of patients to the maintenance phase,” he said. “People used to relapse between chemotherapy courses, but giving the doses closer together kills more cancer cells and fewer patients relapse.”
The most notable advancements within the last year include the advent of Chimeric Antigen Receptor (CAR) T-cells (synthetic receptors or molecules that allow the T-cells to recognize and attach to a specific protein, or antigen, on tumor cells) and bi-specific antibodies (an artificial protein that can recruit T-cells to tumors by simultaneously binding to two different types of antigen – immune cells and tumor cell surfaces). “They haven’t arrived in the clinic yet but the CAR T-cell therapies are really going to be important,” said Morgan. He adds that the institute is about to begin a series of studies with a bi-specific antibody that is similar to Darzalex but works like a CAR-T cell. “Unlike Darzalex, which only has one warhead directed to the myeloma cell, this new antibody has two, — one that fixes to the myeloma cell and another that targets a T-cell, which kills cancer cells. This antibody brings the immune system’s killer cells directly to the myeloma cells,” Morgan said. “It hunts them out, puts a hole in them and kills them.” “This is a very different mechanism of action and I think it will overcome a lot of the biological features associated with high-risk myeloma,” Morgan said. Another major advancement is the new drug, venetoclax (VENCLEXTA) originally used to treat chronic lymphocytic leukemia in those with a specific chromosomal abnormality. In patients with relapsed/ refractory myeloma and the subtype abnormality called translocation t (11;14), it shows promise in making the cancer cells more prone to dying.
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“Combined with another drug, you can get very good responses,” Morgan said. A variety of drugs is key, said Davies. “Essentially, you want an army to fight,” she said. “And you want your drugs to work in different ways. If you use the same drug all the time some cells will become resistant to it, but if you use drugs with different mechanisms of actions, you’re going to get a synergistic effect.” Clinical success rooted in research “Without research, none of these advances would have happened and the patients at UAMS are very interested in helping,” Morgan said. “Almost every patient I’ve met is willing to help with research because it helps them and others in the same position.”
“We’ve been doing sequential studies, are on our seventh high-risk study now, and I think we’re making more progress with each one.”
“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.”
Foundation for success “One of the key factors of our success is being able to keep track of patients here for nearly 30 years,” Davies said. “Because the patients have been so well characterized, researchers can review the data and see the results after changes were made or new drugs were added.” The institute’s database and history are crucial today as researchers review it, not just with the gene expression profile, which has been available for many years, but with the additional genetic information now available, layering the genetic history onto the clinical history and using new genetic tests to try to shed light onto it.
CAR T-CELL THERAPY: HOW IT WORKS It uses the body's own immune system to fight cancer
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Remove immune cells called T cells from a patient's blood.
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Genetically alter the cells in a lab to contain certain proteins.
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Inject cells back into the patient.
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Modified proteins help immune cells find and kill cancer cells.
T. Glenn Pait, M.D., performs specialized spinal surgery at UAMS. myeloma.uams
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Healthy Diet is for Myeloma Survivors
Key
Dana McClendon, an outpatient oncology dietitian, works with patients to obtain the best quality of life possible. Dana visits with Cynthia Scott from Mobile, Alabama.
M “Between medications and diet modifications we can usually get it to where it's manageable.”
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edical nutrition therapy is an important part of treatment for myeloma patients. Dana McClendon, an outpatient oncology dietitian, guides patients with oneon-one counseling. “Myeloma patients can have long-term effects of their cancer treatment for years after or a pre-existing condition can be made worse and they need help managing it,” says McClendon with UAMS Nutrition Services. Choosing the right balance of foods can help patients maintain strength and energy during treatment to offset the effects of
altered metabolism and improve their overall health. Challenges can range from diabetes or weight management issues to an irritable bowel disorder. Some patients in remission are physically active and need a registered dietician who specializes in sports nutrition to help them improve their times in running, biking, or swimming, she said. “Some longtime survivors have continual, chronic diarrhea due to injury to their GI tract. In those cases, modifications of fiber intake can help.” And patients who’ve had their gallbladder removed may have problems with absorption following chemotherapy treatment. “Between medications and diet modifications we can usually get it to where it’s manageable,” McClendon said. Her goal as their dietitian? “To maximize their function as much as possible so they can have the best quality of life.”
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Working to Rebuild Strength and Endurance “The myeloma patients who are longtime survivors come to us mainly for strengthening,” said Chris Oholendt, outpatient rehab manager at UAMS. Myeloma survivors often face generalized weakness following the disease and its accompanying treatment, Oholendt said. His staff combats the loss in functional independence by modifying the patient’s activity and focusing on strengthening activities. Therapists offer personalized therapy for each patient. “The main challenge with myeloma patients is when they’ve had too little physical activity so we work to improve that,” Oholendt said. “Weight-bearing activities can help to rebuild bone, and exercise can increase self-esteem, improve quality of life, balance and coordination, and decrease fatigue and nausea,” says Diane Taylor, a
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Diane Taylor, a physical therapist, works with Garrard Sims, of Grand Prairie, Texas, to help rebuild bone and increase strengthening.
physical therapist who works on the myeloma unit at UAMS. For patients who can’t reach their previous level of function, the goal then becomes to achieve an acceptable level to get them moving forward. “They’re definitely going to be weaker and may have issues with joint integrity and we’ll modify their activity to match their disease state,” Oholendt.
“The main challenge with myeloma patients is when they've had too little physical activity so we work to improve that.” 9
For Nearly 30 Years, Clinical Trials Improve Treatment — A Brief Primer Total Therapy
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Since 1989, a series of ongoing successive clinical trials has focused on combining chemotherapy with stem-cell transplant, using the patient’s own stem cells harvested earlier, followed by a maintenance strategy. Total Therapy treatment aims to kill as much of the tumors as possible during the initial treatment to prevent later relapse. “The Myeloma Institute’s clinical trials program is the backbone of its success and global reputation,” said Doug Steward, clinical research associate. “The knowledge acquired through patient participation in our studies has enabled our physicians to better treat each subsequent generation, and ultimately benefits all patients — trial participants and non-participants alike.” More than 2,000 patients have enrolled in the institute’s trials and 541 have taken part in MGUS/Smoldering observation studies. TT-7, the latest iteration of clinical trials, incorporates Darzalex, an antibody that seeks and kills the cancerous plasma cells. “We think if we can use this at all stages in the treatment of high-risk patients, we’ll be able to get more people into remission and cure more of them,” said Gareth J. Morgan, M.D., Ph.D., director of the institute. The drug, developed specifically for myeloma, is only approved by the Food and Drug Administration for use in relapsed patients. But newly diagnosed ones can have access to it as a clinical trial participant. “In addition to providing patients with access to treatment options that they would not otherwise have, clinical trials give researchers the opportunity to learn more about how multiple myeloma responds to different therapeutic agents,” said Steward.
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Partners in Care
UAMS Myeloma Institute, Highlands Oncology Group Make Perfect Partners
Patrick Travis, M.D., an oncologist at Highlands Oncology Group in Fayetteville, often refers his patients to the UAMS Myeloma Institute for clinical trials, transplants and the intensive portion of their treatments.
Since its inception 21 years ago, Highlands Oncology Group P.A. in Fayetteville has collaborated with the UAMS Myeloma Institute in Little Rock to provide firstclass medical treatment to northwest Arkansans diagnosed with myeloma or related diseases. The 15 specialists practicing in the northwest Arkansas facility offer premier treatment, each focusing on a different area of cancer. At Highlands, Patrick Travis, M.D., treats myeloma patients.
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“Dr. Morgan, Dr. Davies, and their team have helped develop a seamless flow for patients and information,” said Travis. “This dramatically improves quality for the patients, allowing for nearly immediate access to the full range of treatment options.” “Dr. Travis trained here at UAMS so he is well-versed on myeloma and has a good team there,” said Faith Davies, M.D. Highlands often refers patients to the state-of-theart institute for clinical trials,
transplants and the intensive portion of treatment. “The advantage for the patient is the ability to tap into our expertise and have access to recent advances in genetic testing and imaging techniques such as diffusion-weighted magnetic resonance imaging (MRI),” Davies said. “It’s a really good model.” The partnership includes physicians consulting in real time with their counterparts at UAMS via video conferencing. Upon reaching the maintenance portion of their treatments, patients return to Highlands. “Because of the strong support and collaboration we get from the UAMS Myeloma Institute, the majority of our patients are shared between Highlands Oncology Group and the institute,” Travis said. “From the patient’s perspective, having your regular local oncologist but being able to consult with a highly trained one specifically for your own area is really important,” explained Davies. “It becomes a three-way partnership with the local oncologist, the patient and the specialist.”
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Clinical Trial Brings Remission for DeValls Bluff Woman
“I’m really happy with Dr. Morgan and feel like the Myeloma Institute is giving me the best care possible,” said Sue Weddle of DeValls Bluff, the second patient to enroll in the TT-7 program, one of the latest clinical trials for high-risk patients.
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arolyn Sue Weddle of DeValls Bluff recently spent seven years being there for her husband, Harry, as he battled prostate cancer. Although strong and
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determined, Weddle’s husband lost his fight in May 2017 at age 72. “He never quit; he kept on working and going,” Weddle recalled. “So I wasn’t
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ever really his caregiver but instead his companion.” But during a family reunion in late 2016, Weddle’s own illness came to light while horseback riding with her granddaughter. “I kicked my horse up to a trot and felt a hard pain, like something hit me in between my shoulder blades.” The pain went away and she later moved some hay, but when Weddle got up the next morning, she could barely walk. Her husband took her to the emergency room in Stuttgart, where she was given pain medicine and told to see her primary care physician the next day. “He ran tests and told me he thought it was cancer,” she says. Not believing that’s what was ailing her, she sought a second opinion from her husband’s oncologist in Little Rock. “He told me it was indeed cancer – myeloma. I had three fractures in my back and had two of them repaired.” She was prescribed Revlimid and began taking the pills. “But he knew I wouldn’t seek further treatment with my husband as sick as he was.” After her husband passed away, Weddle was ready to focus on fighting her own cancer. Her doctor recommended UAMS and she met with Myeloma Institute Director Gareth Morgan, M.D., Ph.D. “They originally had one plan set out for me and Dr. Morgan said I could expect to survive another 20 years,” Weddle said. “But further test results revealed the cancer was more aggressive so he suggested I instead enroll in the TT-7 program.” Weddle was the second patient to enroll in TT-7, one of the latest clinical trials for highrisk patients. She began treatment on her 72nd birthday
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Aug. 14 during which she underwent chemotherapy, stem-cell collection, and a bone-marrow transplant. Treatment continued through late October. Weddle hasn’t experienced some of the treatment’s common side effects – nausea, diarrhea and loss of appetite. “I never felt sick,” she said. “Even when I had a low white blood count and had to wear a mask. I still went out to eat and went shopping.” “I feel like whatever they chose was the right path for me. My sister-in-law passed away from cancer in the late 1960s and early 1970s and I watched her go through so much.” After her transplant, doctors could barely find any residual disease. Dr. Morgan hasn’t given her a specific prognosis but told her: “You will have a good, long life.” Weddle said she leans heavily on her faith. “I watched my husband deal with this for seven years,” she said of his battle with cancer. “Sometimes, we’d have to travel for treatment for 30 or 40 days in a row. We didn’t complain; we just did whatever we had to do.” From that experience, Weddle learned to value quality of life. “My understanding is that with this treatment I’m receiving, during whatever time I have left, I won’t be having to go back and forth for treatment all the time. I can enjoy the time I have.” “I’m really happy with Dr. Morgan and feel like the Myeloma Institute is giving me the best care possible. From the moment you walk in, people are always smiling and making you feel comfortable. “I believe if you stay upbeat, it makes a difference in your fight and UAMS gives me that strength.”
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My eloma
March Marks Awareness Month
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Multiple myeloma is the second most commonly diagnosed blood cancer and accounts for about 1.6 percent of all cancers. In the United States, more than 100,000 people are living with or in remission from myeloma, with more than 30,000 new cases diagnosed annually. Raising awareness throughout March offers the opportunity to create a greater understanding of the disease and highlights the need for more research and treatments that will result in cures for patients worldwide. Myeloma has one of the highest rates of delay in diagnosis, and helping patients and physicians better understand its signs and symptoms will lead to earlier detection when it’s most treatable. Community Engagement Spread the word by sharing our information with your local primary care clinics and support groups. Social media is a powerful resource allowing millions to share stories, discuss challenges and offer support. Engaging within the community to raise awareness of myeloma offers the opportunity to effect policy changes and assist in patients’ access to the latest diagnostic tools and treatments. Bringing Science into Practice Our world-class physicians and scientists employ novel, new technologies and treatments, resulting in improved survival rates and durations. But there is more to be done. Advances in treatment depend on advances in research. Federal and other grant funding support only 40 percent of the institute’s research budget. By making a gift toward research we can ensure that scientific advances continue despite this reduction in funding.
A bridge across the Arkansas River in downtown Little Rock, lighted in burgundy during the month of March in 2017, in honor of Myeloma Awareness Month.
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Gifts to the Myeloma Institute may be made online at www.myeloma.uams.edu/giving or by check made payable to the UAMS Foundation Fund, with the Myeloma Institute noted in the memo line.
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After DIAGNOSIS, Father, Grandfather INVEST Their Lives in their Families’ FUTURE
Walter Youngblood spends his bonus time helping raise his two grandsons, now 10 and 12.
“I just pray to God every day when I get up that he allows me to stay at least until I get my grandsons through high school.”
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“I had more than 50 percent bone involvement and it wasn’t looking good,” said Walter Youngblood, 65, of Jackson, Miss. Youngblood was recalling his first visit to the UAMS Myeloma Institute in 2003 after being diagnosed with myeloma. Fifteen years later, he is still taking medication but is not in active treatment. He visits the Myeloma Institute every six months where he sees his current doctor, Frits van Rhee, M.D., Ph.D.
Youngblood’s treatment has included chemotherapy, first in a small bottle he carried in his pocket, and later a bag he carried on his shoulder. He also underwent a tandem stem cell transplant. Continuing to take oral medications, he returned to his work officiating college basketball games, and in 2008 had just finished calling a game in Jackson when he had a pulmonary embolism.
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The physicians treating him in Mississippi were incredulous that he’d survived; telling him it only takes one clot to prove fatal and his lungs were filled with them. “I said to myself that God has something else for me to do because he’s carried me through all of this,” Youngblood recalled. He began searching for a new purpose for his life. “It was to raise my two grandsons because their father was in prison,” he said. He’s still caring for the boys, now 10 and 12. A U.S. Postal Service retiree, Youngblood has also since retired from officiating
basketball but now serves as an observer. He also works at a local fitness center where perks include use of the facility. “I work out, go swimming and lift a few weights, and I think that’s helped me,” said Youngblood, who also plays golf. His only physical ailments include a hip he injured playing golf and a little neuropathy in his feet and fingertips. “I just pray to God every day when I get up that he allows me to stay at least until I get my grandsons through high school.”
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or Mark Johnston, all of 2017 and the beginning of 2018 has been a reflective time. In December, he turned 50 and in February marked the 20th anniversary of his myeloma diagnosis. “Twenty years ago, I was probably not thinking I would make it to this milestone,” said the Santa Rosa Beach, Fla.-based sales rep and construction consultant. “Back then, not many people did.” Johnston, who is treated at the institute by Maurizio Zangari, M.D., was diagnosed with advanced low-risk multiple myeloma in 1998 with 80 percent of his bone marrow cancerous. He was 30. “I was a new father with a 1 ½ year old son,” he said. “I was raised by an incredible woman, who was a single mom of three, and I had made a promise that if I ever had children, I would do everything in my power to be present in their lives.” Johnston divorced 11 years ago and gained full custody of his son, Mark Jr., nicknamed Chipper, then 9. “It was my prayer to do whatever I had to do to survive; to keep that promise I’d made, and the Myeloma Institute gave me the ability to do so.”
Mark Johnston of Santa Rosa Beach, Fla., was 30 and a new father to his son Mark Jr., nicknamed Chipper, when he was diagnosed with advanced low-risk myeloma in 1998. At the time, 80 percent of his bone marrow was cancerous.
Today, Johnston is in full remission and his son just turned 20. “It’s hard for me to express my gratitude.” His supporters include his mother, Ann Johnston, who worked in the travel business, Continued next page
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“It was my prayer to do whatever I had to do to survive; to keep that promise I'd made, and the Myeloma Institute gave me the ability to do so.”
and her colleagues Ellis and Gus Walton, who opened their Little Rock home to him during his treatments. “My mom contacted them for advice on where to stay in Little Rock,” Johnston said. And they said, ‘We’ll tell you where he’s going to stay, he’s going to stay with us.’ And I’d never met them in my life. From that point, they have literally been my second family.” Since his initial treatment, he has relapsed twice, in 2004 and in 2011.
“And, I know that there are drugs out that would do the trick should there be another relapse.” Johnston said the doctors are equally concerned with quality of life, doing as much of the treatment as possible as an outpatient so he can still be an active father, have a career and live his life. “Their goal is to help you live, not just survive.”
Mark Johnston (center) visits with Gus and Ellis Walton of Little Rock recently. Two decades ago, the Waltons opened their home for Mark during his treatment in Little Rock. Johnston now considers the Waltons his second family.
Mark Johnston of Santa Rosa Beach, Florida, pictured with his son, Mark Jr., nicknamed Chipper, turned 50 in December, a birthday he didn’t think he’d live to see when he was diagnosed with myeloma 20 years ago.
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Evolutionary biology of high-risk multiple myeloma A new publication in Nature Reviews/Cancer September 2017 Authors: Charlotte Pawlyn, M.D., Ph.D., and Gareth J. Morgan M.D., Ph.D. The outcomes for most myeloma patients have improved over recent decades, driven by treatment advances. However, patients considered to have high-risk disease have not benefited. Understanding how high-risk disease evolves is crucial if we are to improve outcomes. This can be accomplished by identifying the genetic mechanisms and mutations driving the transition of a normal plasma cell to one with the features of the following disease stages: monoclonal gammopathy of undetermined significance (MGUS), smoldering myeloma, myeloma and plasma cell leukemia. Although
myeloma initiating events are clonal, subsequent driver lesions often occur in a subclone of cells, facilitating progression by Darwinian selection processes. Understanding the co-evolution of the clones within their microenvironment will be crucial for therapeutically manipulating the process. The end stage of progression is the generation of a state associated with treatment resistance, increased proliferation, evasion of apoptosis and an ability to grow independently of the bone marrow microenvironment. In this review, we discuss these end-stage highrisk disease states and how new information is improving our understanding of their evolutionary trajectories, how they may be diagnosed and the biological behavior that must be addressed if they are to be treated effectively.
Spatial genomic heterogeneity in multiple myeloma reveal by multiregion sequencing A new publication in Nature Communications August 16, 2017 Primary authors: Leo Rasche, M.D., and Niels Weinhold, Ph.D. UAMS researchers with the Myeloma Institute have identified one reason myeloma patients respond differently to treatment – the cancer cells can vary in type and intensity depending on where in the bone marrow they are located. The study highlights the need to investigate more than the standard biopsy site to obtain correct risk profiles. For the study, which included 51 patients, the researchers tested several areas of the cancer
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including specimens from both the pelvis and from so–called focal lesions, which are nodular plasma cell accumulations present in most myeloma patients and which are found through radiology. The authors — Rasche, Weinhold, the institute Director Gareth Morgan, M.D., Ph.D., and Deputy Director Faith E. Davies, M.D., showed that the most aggressive tumors frequently were only found in focal lesions. “The genomic profiles of the abnormal plasma cells could be very different between the sites of focal lesions and the pelvis, but the pelvis is the standard site where biopsies are taken for diagnostics,” said Rasche.
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Carol Weiss of McCormick, South Carolina, her husband, Larry, and David Ashmore (right), executive director of administration for the Myeloma Institute, pose with the quilt Carol made in appreciation of her care at the institute.
Myeloma Patient Crafts Quilt to Express Thankfulness for Treatment
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hat began as an off-hand compliment in passing in the eighth-floor waiting area of the UAMS Myeloma Institute flourished into a pattern for Carol Weiss of McCormick, S.C., to interweave her post-retirement pastime and passion into a unique and inspiring thank-you gift. About two and a half years ago, Weiss, now 60, was diagnosed with smoldering myeloma, a diagnosis that was recently upgraded
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to “slow, progressive multiple myeloma,” and she visits the institute every six months. “One day at the clinic I was waiting to see the doctor and was working on my hand quilting. A gentleman who worked there admired my work and said ‘You need to make one for the institute.’ And I replied, ‘OK, I will.’ He then responded ‘I’m just kidding.’ And I said, ‘I’m not. I’d love to make a quilt for the institute.’
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The common thread? Her deep gratitude for all those she’s come in contact with during her treatment. And so she did. “It’s different from anything else I’ve ever made,” she said of the 50inch round, machine-sewn quilt. In the center are four comforting words – ‘No one fights alone’ – clipped from a t-shirt earlier purchased from the Winthrop P. Rockefeller Cancer Institute’s gift shop. She crafted the quilt in the rich burgundy hue symbolic of multiple myeloma. She named the quilt Sanguine, which means consisting of or relating to blood. “I looked the word up and found it also means being hopeful in a difficult situation, so it was the perfect name,” she said of the quilt, comprised of 40 different strips of fabric. For Weiss, crafting the quilt was therapeutic. “The quality of care I have received has been at the highest level, both technically and spiritually. It gives me great pleasure to express my gratitude with something besides words. “Visually, it’s a very happy, bright quilt and I hope it makes people who see it feel the same way.” Weiss and her husband, Larry, presented the piece to institute employees in late October. At the time of her diagnosis, she had recently retired as a personal trainer in the Charleston area. Upon relocating to McCormack, S.C., she decided it was time for a long overdue physical. Her lab results showed high protein levels. Additional tests were
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ordered and a bone marrow test revealed smoldering myeloma. A doctor in Augusta referred her to an oncologist there. “He told me within 10 years I’d have full-blown myeloma and there was no cure for it,” Weiss said. She sought advice from her physician friends, one a friend of James Suen, M.D., at UAMS; another an oncologist at Johns Hopkins Medicine. “They said I needed to go to Little Rock,” Weiss said. “Roy Sessions, an oncologist in Charleston, told me if it was his wife, he’d get her to Little Rock.” Today, she still believes she made the best decision. “I’m just so impressed with everyone at the Myeloma Institute,” said Weiss, whose doctor is Frits van Rhee, M.D., Ph.D. “From the moment I made my first phone call to the Myeloma Institute it’s been nothing but a supportive and positive experience. Everybody here has been very caring and professional.” When Weiss meets myeloma patients, she advises them to come to Little Rock. “I was told the institute is the No. 1 myeloma research institute in the nation and they are No. 1 in my opinion as well. The staff at every level and position is always welcoming, comforting and assistive. I never feel like I’m just a number,” Weiss said. “The institute is just filled with genuinely caring people. On a scale of 1 to 10, I’d rank all the people who work there as a 12.”
“I was told the institute is the No. 1 myeloma research institute in the nation and they are No. 1 in my opinion as well. The staff at every level and position is always welcoming, comforting and assistive. I never feel like I'm just a number.”
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Bob Rosenblatt pauses for a photo while enjoying Disney World in Florida with his family on his 67th birthday last November. “My results have been remarkable and extraordinary and awemazing!� wrote Rosenblatt in reflecting on his treatment for myeloma at UAMS
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Cancer's Long and Winding Road:
Awe-full to Awe-mazing
From
By Bob Rosenblatt
(Condensed from the spring 2016 issue of Voices, the journal of the American Academy of Psychotherapists)
O
ne day in September 2014, my life was going fantastically when I made one false step and was put on course to confront my own mortality. Would my attitude and spirit serve me well in light of this newest obstacle, multiple myeloma? What was happening? I didn’t feel sick. I was at the National Cancer Institute in Washington, myeloma.uams
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D.C., waiting for my hematologist/ oncologist to explain. Why did I not feel like myself? What happened to my abundant energy? I fell while playing basketball with friends and, in excruciating back pain, thought I had herniated a disk. Unfortunately, that was my second thought. The first thought was: I now had the same disease that decimated my father in less than four months, multiple myeloma. I immediately discarded that idea. Well into my 60s, I was living an active, abundant life Then the doctor entered and my life changed in an instant. I had, indeed, developed multiple myeloma. The doctor explained the lengthy treatment of chemotherapy, followed by one stem-cell transplant. Life expectancy was 10 to 12 years. The prognosis was so disappointing. My brother-in–law asked the doctor where she would take a family member for a second opinion or treatment? She immediately responded, “Little Rock, Arkansas…the Myeloma Institute.” She said it was the cutting-edge medical facility for multiple myeloma. My L4 and L5 vertebrae were repaired and in early 2015, I visited
“The spirit of the Myeloma Institute paralleled my fighting attitude, so I wanted the institute on my cure team.”
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“My myeloma was not a viral form and the institute personalized my care based on my genetics and the DNA of my strain of the disease. The fight was on!”
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the institute for a second opinion. Wow! It was most definitely the place. It was an awe-inspiring medical facility dedicated to research and treatment of my disease. I knew that I would be able to surrender to their treatment protocol, even though it was more rigorous with a required tandem stem-cell transplant. They told me their data showed life expectancy of 15–20 years or more. They used the word cure while the National Cancer Institute talked about remission. The spirit of the Myeloma Institute paralleled my fighting attitude, so I wanted the institute on my cure team. I was lucky. I had “run of the mill” myeloma, diagnosed early enough to be treatable. I was eligible for a transplant with my own stem cells. My myeloma was not a viral form and the institute personalized my care based on my genetics and the DNA of my strain of the disease. The fight was on! Treatment began with intensive chemotherapy, administered at the National Cancer Institute under the direction of the Myeloma Institute protocol. The initial phase was successful and I was close to remission by the time I left for the transplants in Little Rock. The first phase of the treatment included harvesting stem cells, which went perfectly. After 10 days back home, I returned to Little Rock for the first transplant. I endured heavy-duty chemotherapy for four days with
melphalan wiping out most of the cells in my bone marrow that had grown back after the harvest. The day after, I was infused with 10 million baby stem cells free of cancer or chemotherapy that would, in 9–12 days, turn into platelets, white blood cells and red blood cells with growth hormone injections stimulating their growth. On the 11th day, I had 4,000 WBCs and my platelet count was also up. I was soon discharged and returned home. Six weeks later, I returned for the second transplant, which went just as well. In October 2015, I was sent home to recover and find my way back to my life of family friends and my work as a psychotherapist. Returning to Little Rock, I was given a new drug that allowed me to avoid additional broadly targeted chemotherapy by marking the bad plasma cells so the blind immune system can identify and destroy them. My results have been remarkable and extraordinary and awe-mazing! My dictionary defined awe as a strong feeling of fear, dread, respect and wonder – all feelings I experienced. As awful as this process was, recovering my life and sustaining my spirit has been awesome. Editor’s Note: Dr. Bob Rosenblatt has returned to the Myeloma Institute six times and has been treated with Darzalex (daratumumab). All his M protein numbers are zero!
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RIDE Myeloma Institute's
for Research
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UAMS MYELOMA INSTITUTE TEAM GOES THE DISTANCE to FIGHT CANCER
Maurizio Zangari, M.D, visits with his patient Ritchie Brown of Little Rock and Brown’s wife, Tina, at a prerace dinner the evening before the inaugural Ride for Research in September 2017.
R
itchie Brown of Little Rock has had two stem-cell transplants since December 2016. But you certainly couldn’t tell it this past fall as he rode his bicycle 50 miles to raise awareness of multiple myeloma, the cancer he has been fighting with the help of the UAMS Myeloma Institute. Brown, who is in complete remission, was part of a group of 81 riders who participated in the institute’s “Ride for Research” on Sept. 23 as part of the annual Big Dam Bridge 100 in Little Rock, which drew more than 3,200 others from 32 states. Ride for Research was the brainchild of Myeloma Institute Director Gareth Morgan,
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Ritchie Brown, who underwent two stem-cell transplants since December 2016, nevertheless rode his bike 50 miles less than a year later to raise awareness of myeloma.
M.D., Ph.D., who with Deputy Director Faith Davies, M.D., led their team on the ride with course lengths ranging from 10 to 100 miles. The institute’s team included patients, their families, sponsors, supporters and 24 UAMS employees —13 of them from the Myeloma Institute. Besides increasing awareness, their efforts raised about $75,000 in donations and pledges. “It was a great ride and I exceeded some personal goals,” said Brown, 57, a structural engineer who posted a finish time of 2:37. His wife, Tina, came in at four hours. Brown’s son, Reid, rode the entire 100 miles with a finish time of 3:58.
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“It was exciting to perform at near pre-diagnosis levels,” said Brown, who rides a Trek Madone. He learned of the race from Cerisse Harcourt, A.P.R.N., his nurse at the institute, and began training as soon as he finished treatment in early July. Brown didn’t get to ride alongside his physician, Maurizio Zangari, M.D., who rode a different 32-mile course but passed him as they were going in opposite directions. “The people who are cycling are doing a little bit of suffering in tribute to the patients who do a lot of suffering when they are going through treatment,” Morgan said before the race. “But I think we really are curing people and this is in tribute to all of you who are the patients.” The Ride for Research team members, ages 9 to 80, rode distances on various courses. Of the 10 members signing up for the 100-mile course, five were with the institute, including Morgan and Davies. Others were myeloma researchers Brian Walker, Ph.D., and Sarah K. Johnson, Ph.D., who crossed the finish line together, and Niels Weinhold, Ph.D., the only employee to ride the course on a mountain bike. Weinhold rode a Trek Superfly, which he said lived up to its name. He finished in 7:06:18. Did he get some ribbing from his colleagues about his cycling choice? “A lot,” Weinhold said. “But it stopped way before the finish line.” During his ride, he had a flat tire near the Wye Mountain station and
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had to walk a few hundred yards before he found a pump to repair it. The flat cost him about 30 to 45 minutes. Finishing mid-afternoon, he waited at the finish line for the rest of his colleagues. Walker and Johnson arrived next. Morgan and Davies were the last to ride across the finish line about eight minutes after the race officially closed at 4:30 p.m. As the pair rounded the final bend and came into sight, cheers broke out and noise makers clanked as they were greeted and celebrated. Arriving later than anticipated, they were still right on time. Everyone on the team, regardless of the miles conquered, went the distance, showing their true colors in red, gray and black UAMS cycling jerseys. Brown had high praise for his experiences of being treated at the Myeloma Institute and said he would quickly recommend others seek treatment there. “Living in Little Rock, being treated at UAMS was an easy decision,” he said. “The UAMS staff have always made difficult situations better.” Brown said all the UAMS employees he’s encountered during his treatment do their best to be happy and fun while maintaining professionalism in treating a very serious disease. “I told my wife that considering the situation of the patients, the myeloma clinic and Infusion 4 are the happiest places you will ever be.”
“The people who are cycling are doing a little bit of suffering in tribute to the patients who do a lot of suffering when they are going through treatment. But I think we really are curing people and this is in tribute to all of you who are the patients.”
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UAMS Multiple Myeloma Ride for Research in conjunction with the Big Dam Bridge 100. (Left to right) Lisa Jiles, Shelly Moon and Julie Ferguson.
Conway Cyclist Rides in
Memory of Dad J
ulie Ferguson, 51, of Conway, straddled her Trek bike and joined 80 others this past fall to ride in the UAMS Myeloma Institute’s Ride for Research held in conjunction with the Big Dam Bridge 100 ride Sept. 23. “I decided to get involved because the research and awareness of multiple myeloma is important,” said Ferguson whose 80-year-old father David L. Baker of Conway died of complications of the disease in 2010. The longtime pharmacist,
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who owned several drugstores in Conway and in Little Rock, was diagnosed in 2006. His daughter credits the physicians at the Myeloma Institute with extending his life. “Without treatment, my dad would have died within months,” she said. “Although the treatment was a terrible battle with a lot of ups and downs, my dad had the best and newest treatments at UAMS, which led him into remission.” During their time at the institute, Baker and his wife, Carolyn, met other myeloma patients from all over the world who came to Little Rock for treatment. “I see that UAMS is continuing to improve the facilities, doctors, staff and research,” Ferguson said. “I am hopeful the next treatment for myeloma is a cure.” myeloma.uams
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Ferguson, who began riding with Women Bike Arkansas in early 2017, says the sport has been challenging. “It’s been tough,” said the homemaker who also manages rental properties. “I have been knocked down and felt defeated, but I get back up and try it again. I feel stronger every time I ride.” She signed up to ride the 10-mile course but later raised the bar, more than tripling the distance. “I changed it to the 32-mile course because I am riding for the research and awareness of myeloma. My dad had a challenge and fought hard,” she said prior to riding. “I am taking up the challenge, the fight, the ‘never give up’ attitude for him and the many others who fought or are currently fighting myeloma.” Until Ride for Research, the most miles Ferguson had covered in one ride was 20. “This was definitely a challenge,” she said. Joining her was her husband, Mark, who rode the 52mile course, and her friends from Conway — Shelly Moon, Lisa Jiles and Ginger Johnson. “The ride was very inspiring. We are so proud of the UAMS Myeloma Institute and the motivation the staff has in finding a cure. I’m feeling strong and confident with the UAMS myeloma team.” Ferguson’s family has a long history with UAMS, including several family members who are graduates and two scholarships there begun by her family. In 1995, her father and his brothers established the J. C. Baker, Sr. and Family Scholarship in Pharmacy myeloma.uams
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in memory of their father John Cleveland Baker, a pre-World War I pharmacist who opened Baker Drugstore in Marshall, Ark. It is still open today, now owned and operated by J.C.’s grandchildren. More recently, Ferguson’s brother, David, established the David L. Baker, Sr. Scholarship in honor of their father shortly after his death. “With the educational history we have with UAMS and the familiarity of the high standards of staff at the school and hospital, we were thrilled to know that UAMS was the best place in the world to treat my dad’s onset and long-term treatment of multiple myeloma,” Ferguson said. When he was diagnosed in 2006, she’d never heard of the rare blood and bone disease. And Ferguson’s friends would often confuse it with the skin cancer melanoma. “There was not a cure. Instead, remission was what we could look forward to experiencing with great joy. That was the goal and the only one that comes with a challenge, a fight and time and time again the words… ‘Never give up!’” She watched as her father fought the disease. “I saw him in pain before being diagnosed, undergoing aggressive treatment and being knocked down to a wheelchair before rallying to enjoy his family and finally go into remission,” Ferguson said. “We were so thankful that we didn’t have to go anywhere else for the very best treatment. From what I saw in the aggressive and scientific treatment of my dad, I’m sure and hopeful we are close to a cure.”
“My dad had a challenge and fought hard, I am taking up the challenge, the fight, the 'never give up' attitude for him and the many others who fought or are currently fighting myeloma.”
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Loved Ones Ride for Research for
‘Team Mom’
Myeloma patient Carolyn Barber (center) with family members who participated in the Myeloma Institute’s “Ride for Research” in her honor: (from left) Bobby “Eddie” Bryan, Miranda Bryan, Renee Crawford, Pam Wilson, Hank Wilson, Casey Wilson and Sandra Bryan.
C
arolyn Barber, of El Dorado, waited as six of her loved ones – two daughters, a son, two granddaughters and a greatgrandson – each rode 10 miles in the UAMS Myeloma Institute’s inaugural Ride for Research this past fall across central Arkansas in honor of the now 76-year-old’s battle against myeloma. “It was wonderful,” said Barber. “I just couldn’t believe they all wanted to do this.” Barber’s husband, Don, 81, was diagnosed with Parkinson’s disease nine years ago and died in July of complications from an infection. Her family participated in the Ride for Research on Sept. 23 hoping to lift Barber’s spirits.
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“We heard about the race through my daughter, Casey Wilson, who’s been a registered nurse for the last 10 years and is in her fourth semester of the Family Nurse Practitioner program at UAMS,” said Barber’s eldest daughter, Renee Crawford of El Dorado. “She thought it would be a great way for the family to show support for her grandmother, who was diagnosed with multiple myeloma in the summer of 2016.” Wilson and her then-8-year-old son, Hank, had been looking for a race they could enter together. “I read him the email stating that the race would be held in September and how it would benefit research for the type of
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cancer that Mamaw Carolyn has,” said Wilson of the third-grader. “He was eager for us to sign up for our first bike race and glad it would benefit our precious Mamaw.” The grateful matriarch was at the finish line greeting each one as they came through. In addition to Crawford, they included daughter Pam Wilson and son Bobby “Eddie” Bryan, both of Junction City; granddaughters Miranda Bryan of Jackson City and Casey Wilson of El Dorado; and Hank, Barber’s great-grandson. Barber and Sandra Bryan, her daughter-in-law and caregiver, served as honorary team members. “She loved having us be ‘Team Mom,’” said Pam Wilson. “And we loved mom being able to be at the finish line for us because we were there for her.” “I didn’t know if I’d be able to go, but I was,” said Barber of attending the ride. “This was such an excitement and such a thrill.” Barber has responded well to treatment from her physician Frits van Rhee, M.D., Ph.D. She receives weekly shots close to her home and visits the institute in Little Rock monthly. Before her illness, Barber was active and vivacious and loved to travel and dance. “But she suddenly became very easily exhausted and one day passed out,” Crawford recalled. “During a visit to the emergency room, we discovered she had a hemoglobin of seven and after several tests, she was diagnosed with multiple myeloma.”
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Crawford, a nurse for 20 years, and her daughter Casey Wilson immediately began researching myeloma. “We discovered the UAMS Myeloma Institute was the place to go for cutting-edge treatment,” Crawford said. After meeting van Rhee and Kristen Carter, A.P.R.N., “we were truly amazed at their kindness and commitment to getting Mom back to dancing and traveling.” She said the family has met many more dedicated doctors, nurses and helpful staff along the way. “We are still on this journey and hope to get to remission ultimately,” Crawford said. “We are thankful for all of the wonderful support from UAMS and for allowing us to be part of this fun event.” Crawford, her daughter and grandson Hank prepared for the ride by riding a five-mile loop near their homes since July. Crawford also talked her sister Pam, brother Bobby and niece Miranda into joining the ride. “They all purchased bicycles last July and August and began training,” said Crawford, who received a new Trek bike in July as a birthday present. “We were all pleasantly surprised we were able to complete the 10-mile course and found we loved the competition. We hope to come back this year and aim for a longer distance.” Barber is looking forward to the race in September. “My great-grandson Hank said he wants to ride the 32-mile course.”
“We discovered the UAMS Myeloma Institute was the place to go for cutting-edge treatment. After meeting van Rhee and Kristen Carter, A.P.R.N., we were truly amazed at their kindness and commitment to getting mom back to dancing and traveling."
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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 Niels Weinhold, Ph.D. Niels Weinhold, a research assistant professor and director of genetics at the Myeloma Institute, earned his doctorate in molecular biology from the University of Heidelberg, Germany. He served a postdoctoral fellowship at the German Cancer Research Center (DFKZ) where he performed genome-wide association studies of myeloma and led the Molecular Biology Laboratory in the Multiple Myeloma section of the Department of Internal Medicine V at the University of Heidelberg. At the Myeloma Institute, he continues genome-wide association studies, focusing on African-American patients, and studies spatial genomic heterogeneity and treatment’s impact on the clonal architecture of multiple myeloma. Leo Rasche, M.D. Leo Rasche, is a clinician scientist at the Myeloma Institute. He holds a medical degree from the University of Wurzburg, Germany and is a fully trained hematologist and oncologist. In Rasche’s work at the Myeloma Institute, through a postdoctoral fellowship from the German Research Foundation (DHG), he strives to transfer the evolving knowledge of tumor biology from the lab to the clinic. He is researching minimal residual disease, medical imaging and tumor genomics.