- 1 Multiple Myeloma: A Rare and Complex Cancer
- 2 UAMS Study Identifies One Reason Myeloma Patients Respond Differently to Treatment
- 3 Myeloma Patient’s Loved Ones Roll ‘Ride for Research’ in Her Honor
- 4 UAMS Myeloma Institute Team Goes the Distance to Fight Cancer
- 5 Conway Cyclist Joins UAMS Myeloma Institute Team to Honor Dad
- 6 Myeloma Institute Hosts Patient Power Event on Rare Blood Diseases
Oct. 10, 2017 | Researchers with the Myeloma Institute at the University of Arkansas for Medical Sciences (UAMS) 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 team headed by Leo Rasche, M.D., and Niels Weinhold, Ph.D., reported these findings in the Aug. 16 edition of the online publication Nature Communications in the article “Spatial genomic heterogeneity in multiple myeloma revealed by multi-region sequencing.”
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 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, which include Rasche, Weinhold, the institute’s director Gareth Morgan, M.D., Ph.D., and the 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.
He added that the disease was not evenly distributed in the bone marrow but was instead a patchy disease with hotspots.
“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. “If there is a lesion that is suspicious in imaging, then it would be checked.”
Future research at the Myeloma Institute will investigate non-invasive techniques such as medical imaging or tests from the peripheral blood to better identify patients with aggressive tumors. Until then, suspicious focal lesions have to be biopsied.
Oct. 6, 2017 | Carolyn Barber, of El Dorado, waited as six of her loved ones – two daughters, a son, two granddaughters and a great-grandson – each rode 10 miles in the recent UAMS Myeloma Institute’s inaugural Ride for Research across central Arkansas in honor of the 75-year-old’s battle against myeloma.
“It was wonderful,” said Barber. “I just couldn’t believe they all wanted to do this.”
The relatives, hailing from south Arkansas, made the trek to Little Rock to take part in the event in her honor. 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 hoped participating in the Ride for Research on Sept. 23 would lift her spirits.
The ride, held in conjunction with the Big Dam Bridge 100 cycling tour, included 81 members on the UAMS Myeloma Institute’s teamranging in age from 9 to 80. The riders included patients and family members, sponsors, supporters, and 24 UAMS employees — 13 of them from the UAMS Myeloma Institute. The goal was to bring awareness to and raise money for research of the rare blood and bone disease.
The institute’s director Gareth Morgan, M.D., Ph.D., and deputy director Faith Davies, M.D., led the charge in taking their fight against myeloma out of the clinics and research labs and onto the roadways of central Arkansas on this warm fall day. The institute’s team, riding varying courses ranging from 10 to 100 miles, joined more than 3,200 other riders from 32 states who were participating in the Big Dam Bridge 100. Morgan, Davies and three others from the UAMS Myeloma Institute rode the full 100 miles.
“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 9-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 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.”
Crawford, who’s worked as 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. We met Dr. van Rhee and Kristen Carter, A.P.R.N., and were truly amazed at their kindness and commitment to getting Mom back to dancing and traveling.”
She added that 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 also 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 in 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 that we were able to complete the 10-mile course and found we loved the competition. We hope to come back next year and aim for a longer distance.”
If the race is held again next year, Barber feels certain her family will break out their bikes again.
“My great-grandson Hank said next year he wants to ride the 32-mile course.”
Oct. 5, 2017 | Ritchie Brown of Little Rock has had two stem-cell transplants since December 2016.
But you certainly couldn’t tell it Sept. 23 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” 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, M.D., Ph.D., who with Deputy Director Faith Davies, M.D., took to their bicycles to lead their team on the ride that had various course lengths 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 of the disease, 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, also an avid cyclist, rode the entire 100 miles with a finish time of 3:58.
“It was exciting to perform at near pre-diagnosis levels,” said Brown, who rides a Trek Madone. He learned about the race from Cerisse Harcourt, A.P.R.N., his nurse at the institute, and began training as soon as he finished treatment July 13.
Brown didn’t get to ride alongside his physician, Maurizio Zangari, M.D., who rode a different 32-mile course with wife, Elda, and son, Alex, but passed him as they were going in opposite directions.
The eve of the race, the institute hosted a carbohydrate-loading buffet of salad, pasta and desserts at a local restaurant in Little Rock’s Riverdale neighborhood where Morgan welcomed 70 guests, most of them riders or sponsors.
“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 explained. “But I think we really are curing people and this is in tribute to all of you who are the patients.”
Brown said he was very appreciative of both the ride and dinner. “It was great to meet the doctors and researchers in a social setting and to make connections with other patients.”
The Ride for Research team members, ages 8 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 had to walk a few hundred yards before he found a pump to repair it. The flat cost him about 30 to 45 minutes.
“Fortunately, and in contrast to several road bikers, a nice older couple from the Wye Mountain neighborhood took pity on me.”
Finishing mid-afternoon, he rested and waited at the finish line for the rest of his colleagues. Walker and Johnson arrived next.
As the sun continued to sink in the late-afternoon sky, 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. and mere moments before the inflated finish line was lowered.
It remained longer than it otherwise would have, amid pleas from Morgan’s and Davies’ supporters, who were tracking them via a phone that showed they were two minutes away.
As the pair of physicians rounded the final bend and came into sight, cheers broke out and noise makers clanked as Morgan and Davies 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 as they literally rode for research.
Brown had high praise for his experiences of being treated at Myeloma Institute and said he would quickly recommend others with the rare blood and bone disease 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.”
Sept. 20, 2017 | Julie Ferguson, 51, of Conway, plans to straddle her Trek bike and join 60 others Sept. 23 to ride in the UAMS Myeloma Institute’s Ride for Research.
Held in conjunction with the Big Dam Bridge 100, the 60 patients, supporters, donors and employees are riding to raise awareness of the blood and bone disease and money to help fight it with research and treatment.
“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, who owned several drugstores in Conway and in Little Rock, was diagnosed in 2006.
His daughter credits the physicians at UAMS 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 here, 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.”
Ferguson, who began riding with Women Bike Arkansas earlier this year, 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,” she explained. “I feel stronger every time I ride.”
She originally signed up to ride the 10-mile course but later raised the bar for herself, more than tripling the distance.
“I changed it to the 32-mile course because I am riding for the research and awareness of myeloma and my dad had a challenge and fought hard,” she said. “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.”
To date, the most miles Ferguson has covered in one ride has been 20.
“This will definitely be a challenge,” she says. Joining her will be her husband, Mark, who’s riding the 50-mile course and three of her friends from Conway, Shelly Moon and Lisa Jiles and Ginger Johnson.
Ferguson’s family has a long, deeply rooted history with UAMS, including several of family members who are graduates.
In the late 1980s and early 1990s, her three brothers graduated from UAMS — a pharmacy degree for John and James Baker, owners of Sav On Drugs in Conway; and a medical degree for David, an ophthalmologist and owner of Baker Eye in Conway who’s named after their father.
Additionally, two scholarships at UAMS were established by her family.
“My dad was passionate about pharmacy and was well respected among his peers throughout the state,” Ferguson said, adding that in 1995, her father and his two brothers J.C. and Robert, also pharmacists, established the J. C. Baker, Sr. and Family Scholarship in Pharmacy in memory of their father John Cleveland Baker, an early Arkansas pharmacist who opened Baker Drugstore in Marshall before World War I. It remains 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 a couple of years after his death.
“With the educational history we have with UAMS and the familiarity of the high standard of staff at the school and hospital, we were thrilled to know that UAMS was literally the best place in the world to treat my dad’s onset and long-term treatment of multiple myeloma,” Ferguson said.
When her dad was diagnosed in 2006, she had never heard of the rare blood and bone disease. And when her friends would ask about the cancer, they would confuse it with the skin cancer melanoma.
“There was not a cure. Instead, remission was the word that 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,” recalled Ferguson who was close to obtaining a second degree in interior design from UCA when she quit school to help her mother care for her father a few months before his death.
“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,” she said.
Sept. 18, 2017 | UAMS Myeloma Institute patients, caregivers and health professionals gathered Sept. 9 at UAMS for Patient Power, a free event offering information about myeloma and other blood-related diseases and the significance of genetic profiling, imaging and getting involved with developing research.
“Living Well with Myeloma” drew a crowd of nearly 100, with another 200 participating through live streaming via the UAMS Myeloma Institute’s website. This is the second year that Patient Power, a Seattle-based service founded by Andrew and Esther Schorr that brings information and resources to patients, has brought the event to UAMS.
Former UAMS Myeloma Institute physician Guido Tricot, M.D., Ph.D., emeritus professor of medicine with the University of Iowa Health Care, was a featured guest expert, joining Myeloma Institute Director Gareth Morgan, M.D., Ph.D.; and UAMS’ Faith Davies, M.D.; Frits van Rhee, M.D., Ph.D.; Brian Walker, Ph.D.; and Kristen Carter, A.P.R.N., for the presentation.
Tricot recently moved back to Arkansas after retiring from the Huntsman Cancer Institute at University of Iowa Health Care. While at UAMS from 2001 to 2007, Tricot 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.
Most treatments at the time involved one round of high-dose chemotherapy, which killed not only the patient’s cancerous cells but also healthy ones. To improve upon this, he introduced induction chemotherapy, which uses anti-myeloma drugs before high-dose chemotherapy and stem cell transplant to reduce the tumor burden.
“He is responsible for developing one of the most effective induction regimens for multiple myeloma that’s being used around the world,” Morgan said of Tricot. “The combination chemotherapy approach is really what he is known for; his work formed the basis for one the regimens we still use. It’s well tolerated, gets people into remission quickly and doesn’t damage the stem cells.”
Tricot left UAMS in 2007 to launch the Utah Blood and Marrow Transplant and Myeloma Program at the University of Utah’s Huntsman Cancer Institute as its director. In 2012, he joined the Holden Comprehensive Cancer Center at the University of Iowa Health Care in Iowa City, Iowa.
The Patient Power event included a meet-and-greet session during breakfast followed by a talk-show style formal panel discussion on myeloma treatments, research updates, and the importance of genetic testing and imaging.
Myeloma patient Alan Stephenson of Monroe, La., shared a powerful story of his myeloma diagnosis, treatment and recovery. The 50-year-old financial advisor who experienced the complete fracture of one of his vertebrae before being diagnosed, said that following treatment by Morgan at the Myeloma Institute in the spring of 2016 he is now in remission.
Stephenson said he has returned to his previously active lifestyle including most of his outdoor hobbies — hunting, fishing, archery and more — and plans to take back up scuba diving.