When Hosea Long of Little Rock turned 70, it was a milestone that for most may seem unremarkable. After all, it was not his 100th, 90th or even his 80th birthday.

But it was inspiring and incredible for Long, now 71. The former UAMS employee explained why in an entry titled “Tomorrow starts a new decade” on his WordPress blog.

If you’ve been a follower of my blogs or have read any of them, you probably know that I’m a person who lives with cancer.… I have what’s called Multiple Myeloma. Some really bad stuff that takes the lives of more than 11,000 people in the United States each year. … I’m one of the blessed ones. I’m a 20-plus-year survivor.

The former associate vice chancellor and chief human resources officer who retired in 2013 after 23 years at UAMS, does not dread growing old. Instead, he relishes it. Living with myeloma is one of the topics he addresses at https://oldblessed.com. 

My journey has been one of fear, tears, boisterous laughter, faith, love, thankfulness…whatever emotional and mental dynamic of which you could possibly imagine.

 Long was diagnosed in early 2000 and cherishes his additional time, whether it be a day or a decade. His 70th birthday in the summer of 2020 gave him another chance to celebrate his life.

Looking back, I didn’t expect to be here pecking out some of my thoughts on a laptop, preparing to share them with my small number of followers. I’m grateful for each of you, and especially for the times you’ve given me feedback.

Long began blogging in early 2016.

“I’ve always been very observant of things around me,” he said. “Blogging seemed like a good way for me to excise images from my mind, document them and see what they look like written down.”

He posted an early essay, “A Dark Companion” to a couple of Facebook pages created for patients of myeloma and other chronic illnesses. The large positive response convinced him that blogging could help fellow patients.

“It was a way I could touch people in areas of their lives where they needed encouragement,” he said. 

Long’s journey with myeloma began in the fall of 1999 with nightly fevers, weight loss and reduced energy. The lifelong runner had to give up his daily five-mile runs.

“The energy just wasn’t there anymore,” he said.

His primary care physician suspected myeloma and referred him to the Myeloma Center. Further tests revealed lesions on his skull and confirmation of high-risk myeloma.

I can recall when I received word of my diagnosis. As you can imagine, it hit me like a proverbial ton of bricks.

He received a tandem stem cell transplant in 2000. In late 2017, Long relapsed, but he improved after a year of treatment with the drugs daratumumab and Revlimid. For nearly two years, he has been taking Revlimid for maintenance. He visits UAMS every two months for blood draws and every six months for a full checkup with Maurizio Zangari, M.D.

“I’m living a good life for a 71-year-old with myeloma,” he said, adding that he takes a daily hourlong bike ride followed by light weightlifting. He still maintains his own yard and does chores around the home he shares with Christene, his wife of 35 years. 

I’ve been able to see my three kids grow into adulthood, and I now have six grandkids and one great-grandchild. I love them all, and I think that’s quite the God-given legacy to leave behind. Of course, I’m not ready to just yet…

Aside from blogging, Long enjoys reading, jazz music, science-fiction movies and sewing colorful dashiki garments popular in West Africa. He is interested in African history. 

He remains active in his church, St. John Missionary Baptist, and serves on the City of Little Rock’s Racial and Cultural Diversity Commission.

Long recommends the UAMS Myeloma Center to fellow patients at every opportunity.

“The UAMS Myeloma Center has been at the cutting-edge of myeloma treatment for a long time,” he said. “I believe we have some of the best, first-class physicians and researchers and that I get the best of medical and bedside care available.”

Radiologists Work in Tandem with Myeloma Center Physicians and Staff

Multidisciplinary care is at the heart of the Myeloma Center’s treatment philosophy, and the radiology team plays a key role. 

Imaging provided by Rudy L. Van Hemert, Jr., M.D., and his staff at initial diagnosis and with each follow-up examination are vital to the overall plan of the patient. 

“Our commitment to that process is unchanged, and we are an integral part of the team throughout treatment,” said Van Hemert, an associate professor who is chief of neuroradiology. He completed his residency at the University of Arkansas for Medical Sciences (UAMS) in 1989, followed by a two-year fellowship and joined UAMS in 1995. 

“This partnership has transformed patient care and made a marked impact on survival and quality of life for myeloma patients,” Van Hemert said.

In the infancy of the Myeloma Center’s program, Van Hemert and his colleagues studied a more limited portion of the body. Now, the imaging includes the entire body. The Department of Radiology also assists in lesion biopsies, vertebroplasties and long-term catheter placement. PET-CT is also used to identify and follow myeloma’s lesions.

Van Hemert’s department runs scans from 6 a.m. to 11 p.m., on weekdays, and from 7 a.m. to 7 p.m. on weekends. For in-patient care, magnetic imaging operates 24 hours a day.

“One of the big ways we’ve helped is by running full-body scans that can show from the top of the head to the bottom of the toes,” said. “We do thousands of MRIs a year, and we have more experience with imaging than anywhere else in the world.”

For Van Hemert, the most rewarding part of his work with the Myeloma Center is his involvement with patient care. While the radiologists typically don’t see the patients, they work behind the scene to identify new problems and help guide treatment for patients, both for cancer and non-cancerous issues.

“Radiology in myeloma treatment has progressed from research to essential standard of care,” he said.

However, treatment varies from patient to patient because myeloma is a disease with many variations.

“Sometimes, focal lesions are different within the patient,” Van Hemert said. “We call myeloma one disease, but there are many subtypes of it,” he said, adding that those subtypes change as the disease progresses. Providers then match the current treatment regimen with the specific subtypes to get the most effective, least toxic regimen.

It is crucial to identify the exact disease you have before treatment begins, Van Hemert said. “You need to know what you’re treating, so you can use what works best to kill it.”

While he focuses on helping current patients, he realizes that the work he and his colleagues are doing will also help others in the future.

“It’s been fascinating to see these things we used to do as research now being used as treatment,” Van Hemert said. “Other myeloma programs also benefit from the work the UAMS Myeloma Center is doing.”

For more than 30 years, the staff of the Myeloma Center at the University of Arkansas for Medical Sciences (UAMS) Winthrop P. Rockefeller Cancer Institute has been treating and healing patients with superior care. When COVID-19 arrived in Arkansas in March 2020, that care continued without missing a beat.

Laryn Phillips, RN, a nurse with the Cancer Institute’s Infusion Center B, said the most difficult aspect of the pandemic has been the fear of the unknown, the unrest of the entire world and being stretched thin, physically and emotionally.

“Most folks had never experienced a pandemic,” Phillips said. “It’s the not knowing how to deal with such a crisis or storm that doesn’t seem to stop raging and isn’t over yet.”

The Myeloma Center staff working in the Infusion Center B were warned of possible shortages of sterile gloves, saline and dressings.

“We all had to think outside of the box because our routines were challenged,” said Monica Grazziutti, M.D., physician director of Infusion Center B and a hospitalist with the Myeloma Center. Those challenges included substituting digital meetings for in-person ones.

“When it came to COVID, we had to learn from our patients, who I’ve watched adapt and overcome obstacles for years,” said Nicole Vaden, APRN, a nurse practitioner who works with Frits van Rhee, M.D., Ph.D., clinical director of the Myeloma Center. “A diagnosis of myeloma stops them in their tracks and dramatically changes things, just like the pandemic did for us. But myeloma wasn’t stopping our patients, so COVID wasn’t going to stop us from taking care of them.”

“Teamwork and communication have improved, and we have learned to adapt to whatever obstacles we might face, so we can provide the best care for our patients,” she said.

Vaden said she and her colleagues didn’t experience a shortage of supplies or medications but did need to take care to ensure that there were beds available in the hospital for myeloma patients when they were needed.

“Myeloma didn’t stop because of COVID, and about 500 patients have had stem cell transplants since its arrival in Arkansas in March 2020,” she said.

The most difficult period of the pandemic was in the beginning when visitors, including caregivers, were not allowed in inpatient or outpatient areas, said Grazziutti. Exceptions were made to allow caregivers to accompany some patients with special needs.

During this time, nurses in Infusion B went the extra mile, sitting in cars with caregivers as they waited for loved ones.

“They listened and let them cry on their shoulders,” Phillips said.

Oncologists at the Myeloma Center never stopped prescribing treatments; however, some were postponed when the risk of exposure outweighed the advantages of treatment. Some patients also declined to come for treatment because of pandemic concerns. 

Patients confirmed or suspected of having COVID were isolated to prevent the possible spread to others.

“Initially, it took about a week to get COVID test results,” Grazziutti said. “Then we were able to get them back within hours, which made our work much easier.” 

Individual educational meetings with patients over the phone replaced traditional group gatherings. Masking, which UAMS still requires, frequent handwashing and social distancing also helped keep patients safe.

“This pandemic proved that doing those things prevents all respiratory infections,” Grazziutti said. “We had the first winter without flu or other respiratory infections.”

The staff also encouraged patients to get the vaccine once it became available.

“We truly care about our patients and want to do everything possible to give them the best care,” said Vaden. 

Myeloma Drugs Pivot to also Treat COVID Patients

Two drugs that Myeloma Center oncologists prescribe to treat myeloma or Castleman Disease also benefit COVID-19 patients.

Dexamethasone, a corticosteroid commonly used to treat myeloma patients, showed benefit for COVID patients who had difficulty breathing. “This drug was also previously used for patients with other viral respiratory infections with low oxygenation,” said Monica Grazziutti, M.D.

Tocilizumab, a medication that Myeloma Center patients with Castleman Disease receive in the Infusion B clinic, is also used to treat hospitalized COVID patients with severe inflammation and /or hypoxemia who aren’t responding to dexamethasone, Grazziutti said. 

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Dave Puente of Elk Grove, California, became the first myeloma patient in Arkansas to receive the new chimeric antigen receptor (CAR) T-cell immunotherapy at the University of Arkansas for Medical Sciences (UAMS) Myeloma Center, the only medical facility in Arkansas currently offering the cutting-edge treatment.

UAMS announced in August 2021 that it had gained approval to provide cellular therapy to myeloma patients. 

In this new treatment, the patients’ own immune cells are collected and shipped to a lab in New Jersey and genetically altered. Returned to the patient through infusion, the modified cells expand, multiply and seek out myeloma cells and kill them.

“Dave’s response has been remarkable,” said Frits van Rhee, M.D., Ph.D., clinical director of the Myeloma Center, a couple of weeks after Puente’s November 1 treatment. “His blood work shows that the myeloma is no longer detectable,”
he said.

“This is the dawn of a new day in treatment,” said van Rhee, who has treated Puente’s low-risk myeloma since 2011.

There is a great need for improving the care of myeloma patients who are difficult to treat and have had poor outcomes. This includes those who have had more than four lines of therapy, have failed other treatments and have advanced disease.

Puente, 62, an electrical engineer, was diagnosed with myeloma in June 2008 after he broke his back getting out of bed. He and his wife, Lori, began researching the best treatment centers and soon chose the Winthrop P. Rockefeller Cancer Institute at UAMS.

They have traveled to Little Rock for treatments ever since. Dave Puente has had several treatments, including a tandem stem cell transplant. He was in remission for six years until his myeloma, which mutates to survive, returned.

“Dr. van Rhee said I was running out of options and that I was a good candidate for the CAR T-cell treatment,” he said. The product, known as ABECMA by Bristol-Meyers, was soon followed by a second product. CARVYKTI, by Janssen Biotech, was approved by the Food and Drug Administration in late February.

Puente was due to arrive in early fall for his stems to be harvested, but it was a challenge to get to Arkansas.

His myeloma worsened after he ceased treatments for two months to allow his body to create as many immune cells as possible for collection. Shortly before he was due to arrive, Puente fell down in excruciating pain, and he discovered a broken femur in his leg. He was supposed to remain home for six weeks of therapy and was advised against flying. But time was running out.

“Dr. van Rhee said, ‘You have to find a way to get here for this treatment,’” Puente recalled.

The CAR T-cell immunotherapy treatment is unique in that it requires no follow-up treatments of chemotherapy or maintenance. However, if a patient has received too much therapy, it is more difficult for the cells to work. The treatment can also cause nervous system problems, including seizures or tremors and other side effects, including a weakened immune system and an increased risk of infections.

“The continuity of care he received, with the same two nurses watching after him for several days in a row, was wonderful,” said Lori Puente.

“The hospital staff was tremendous,” Dave Puente said. “No matter what may have happened, they had a plan for dealing with it.”

He remained hospitalized for a week for monitoring.

In addition to treating the patient, the Myeloma Center staff also cares for its caregivers, Lori Puente said.

“They all empower me,” she said. “They care about me and how I’m doing.” 

Dave Puente did so well in the early days and weeks after his treatment, the couple were able to return home in early December, earlier than expected.

“I know that my battle with myeloma will never truly be over so I need to take this time to get in better shape so I can fight it again in the future,” Puente said. “I hope my story gives other patients, who aren’t where I am yet, more hope to hold on because help is coming for them too.”

The couple returned for a check-up in early 2022 after celebrating the holidays and spending time with their children and first grandchild, Savannah, who will have her first birthday soon.

They plan to celebrate the marriage of their daughter in Lake Tahoe this spring.

“She wants me to walk her down the aisle and to dance with her,” Puente said. “And I’m planning to do both.”

Fenghuang (Frank) Zhan, M.D., Ph.D. Moves Myeloma Research forward with Grant Funding

Since Fenghuang (Frank) Zhan, M.D., Ph.D., returned to the Myeloma Center as the research director, the number of researchers working in the center’s labs has increased as has their understanding of types of myeloma that are especially difficult to treat.

“We are excited to have Dr. Zhan back in our fold,” said Frits van Rhee, M.D., Ph.D., clinical director of the Myeloma Center. “He brings with him great expertise regarding the molecular genetics and biology of myeloma, as well as drug resistance to therapy.”

Zhan, who is an endowed chair and also serves as a professor in the UAMS College of Medicine’s Department of Internal Medicine, was previously at the UAMS Myeloma Center from 2002 to 2008, as an assistant professor. 

The native of China was most recently a professor of medicine at the University of Iowa and an adjunct professor with the University of Iowa’s College of Dentistry and Dental Clinics. 

After leaving UAMS in 2008, he joined the Utah Blood and Marrow Transplant and Myeloma Program at the University of Utah’s Huntsman Cancer Institute and later worked at the Holden Comprehensive Cancer Center at the University of Iowa Health Care in Iowa City, Iowa.

Zhan brought with him additional funding in numerous grants. In 2020, Zhan received two National Institute of Health and U.S. Department of Defense grants totaling almost $3.14 million to study the molecular genetics and drug resistance of multiple myeloma. He is also a recent recipient of the Riney Foundation grant of $1.8 million.

Zhan’s grant from the U.S. Department of Defense (DOD) provides $1.3 million, and the other comes from the National Institutes of Health (NIH) for nearly $1.74 million. Both projects aim to better understand the biological processes behind myeloma in order to search for new treatments and cures. The DOD grant runs through 2023 and the NIH grant continues through 2025. 

“Once the biology of myeloma stem cells is better understood, more novel therapeutic targets can be created and tested, with the ultimate goal being to develop a novel therapy and prevent myeloma relapses,” said Zhan.

His lab is using the DOD grant to study the biology of specific myeloma cancer cells that can survive chemotherapy, working to find a potential cure to eradicate these cells.

The theoretical treatment is two-fold — a tandem stem cell transplant accompanied by chemotherapy, followed by a particular type of immunotherapy aimed at killing the remaining drug-resistant cells.

These drug-resistant cells often cause relapses of myeloma and other types of cancers. Zhan believes the protein, CD24, may serve as a reliable indicator of the presence of these drug-resistant cells and that the therapeutic antibody, SWA11, may be used to target them.

“We are working to develop a specific CAR T-cell therapy for this population of patients,” Zhan said, adding that the research is still in early stages.

The NIH-funded study focuses on the NEK2 and PD-L1 genes, striving to uncover how they work and how they possibly fuel myeloma. The disease of patients who have these genes is difficult to cure and the patients are at high risk for relapse.

Therapies targeting PD-L1 have been successful in treating many cancers, but attempts to demonstrate their effectiveness for myeloma have not met with the same success. Zhan believes this is probably because this gene is most common in patients who have a subtype of myeloma called hyperdiploid and PD-L1 studies have not targeted these patients.

As for other subtypes of myeloma where PD-L1 levels are low, such as in high-risk and relapsed myelomas, Zhan believes that a combination of a NEK2 treatment and PD-1/PD-L1 treatment could be effective.

Zhan’s lab of more than a dozen members, including four faculty members, six post-doctorates, two senior scientists, one M.D. student and one graduate student, are working to test these theories at the molecular level using a couple of different methods.

“We have made a lot of progress in this study,” Zhan said of the study that focuses on patients with high-risk myeloma with cancer cells that are drug resistant. “We have made some major advancements and increased immune response.”

“Chemotherapies, stem cell transplants and immunotherapies don’t work with them so we need to reduce the number of NEK2 genes and increase the PD-L1 levels.”

Part of the Riney grant is being used to help develop a new drug, the PROTEC-NEK2 inhibitor. The goal of that research is to use new technology to develop a more effective targeted therapy attacking tumor cells while preserving the normal cells.

“Each group of myeloma is different and we’re trying to identify different molecular targets of each of the groups and develop a new antibody to target those proteins or genes.”

The Myeloma Center’s patient database containing over 24,000 samples with attendant microarray and clinical data from healthy donors, and patients with Plasma Cell Dyscrasia greatly assists in the Myeloma Center researchers’ work.

“Our database is unique, and no one has this huge of a database,” Zhan said. “Within it, we find these markers and are able to move forward to develop this therapy.”

He believes the results of the studies could reach far beyond myeloma to assist in treating many other solid tumor and blood-related cancers.

“Dr. Zhan’s ability to identify and target myeloma stem cells and the genomic classification of the disease is an immense asset to UAMS,” van Rhee said. “He is greatly helping us to further the innovative treatment we have offered for more than 30 years now.” 

It is my great pleasure to introduce the winter 2021/2022 issue of the Myeloma magazine. 

 The past two years have brought unprecedented challenges for all of us. I am very proud that the University of Arkansas for Medical Sciences (UAMS) Myeloma Center has been able to deliver continued outstanding care to our patients due to the dedication of our medical and nursing staff, allied health care professionals and supporting personnel. At times we had to make some modifications to our regular operations, but over all we have been able to maintain a high standard of care with few interruptions. This is exemplified by the fact that approximately 270 patients received an autologous stem cell transplant in the past calendar year.

Hopefully, the COVID-19 pandemic will be in the rear-view mirror by the end of 2022. In the meantime, vaccinations, including booster doses, as well as the advent of oral antiviral drugs and novel monoclonal antibodies, either administered prophylactically or following exposure, will help protect our immunocompromised myeloma patients. 

There have also been exciting new developments in the management of myeloma with immunotherapy, which are discussed in more detail in this issue. The Myeloma Center is excited to offer infusions of the patient’s own genetically enhanced immune cells, also referred to as CAR T-cells, for relapsed myeloma. New forms of antibody therapy for myeloma have also become available. Our quest for National Cancer Institute (NCI) Designation led by our Winthrop P. Rockefeller Cancer Institute director, Dr. Michael Birrer, is proceeding. A direct result of this effort is the expansion of the clinical trial program at UAMS, which will increase the clinical trial portfolio of the Myeloma Center and further improve access for our patients to these novel immunotherapies.

The Myeloma team thanks our patients and families for allowing us to provide care for them. We also are grateful for those who support our scientific research care through philanthropic support. I hope that you will find encouragement and hope in the stories shared by our patients in this issue. 

The future of myeloma care is exciting, and we can anticipate many advances in the next decade. It is likely that immunotherapy will play an increasingly important role in treating myeloma. Novel treatments are set to improve long-term outcome, cure more patients and improve quality of life. 

Frits van Rhee, M.D., Ph.D. MRCP(UK) FRCPath
Clinical Director of the Myeloma Center

It is my pleasure to present the latest issue of Myeloma with important news for you about our ongoing work to treat and extend the lives of those living with multiple myeloma. Since joining the Winthrop P. Rockefeller Cancer Institute in 2019, it has been my honor to work alongside the remarkable faculty and staff of the Myeloma Center. Under the leadership of Frits van Rhee, M.D., Ph.D., the Myeloma Center’s reputation as the world’s leader in myeloma treatment and research is well deserved. 

As we pursue National Cancer Institute (NCI) Designation, our focus on research and clinical trials is paramount. This work is essential to improve treatment for all cancer patients and is bearing fruit for myeloma. In the past year alone, we’ve seen life-saving advancements, including the arrival of CAR T-cell therapy and the opening of our new Infusion Center and first Phase 1 Cancer Clinical Trial Unit.

The cover story featuring Frank Zhan, M.D., Ph.D., shares exciting news about his research to study the molecular genetics and drug resistance in multiple myeloma patients. Also featured are some of our dedicated staff members and stories of resilient survivors.

As we press on toward our goal of achieving NCI Designation, our Myeloma Center and other cancer programs will only grow in their impact on patient’s lives. I thank you for your support of our work. 

Michael Birrer, M.D., Ph.D.
Vice Chancellor, UAMS
Director, Winthrop P. Rockefeller Cancer Institute
Director, Cancer Service Line