Twist of fate Leads to Myeloma Diagnosis for Longtime Survivor

By Linda Haymes

“It was about four inches wide and eight or 10 inches long,” Utley, 79, recalled. “He told me I was wearing my belt too tight.”

Utley was not satisfied with the diagnosis and sought a second opinion from another doctor. Her diagnosis was the same, but Utley balked again.

“Well, let’s just run an MRI to make sure,” the second doctor said. The results surprised them both.

“She came back and said, ‘I have terrible news for you. You have a rare blood disease called myeloma.’ I had never heard of it and did not know what it was. She referred me to the UAMS Myeloma Center.”

Utley was 63 years old when he received his diagnosis. He had three small lesions, less than two centimeters each, two on his pelvis and one on his vertebrae.

“When you receive the kind of news I did and you’re faced with death, your thoughts immediately turn to your family,” he said. “I thought of my wife Barbara, my two daughters and my three grandchildren,” he said. “His oldest granddaughter was 10 years old, and I thought, ‘I won’t get to see any of them grow up.’”

He did, though, thanks to the treatment he received at UAMS. His grandchildren are now 22, 24 and 26 years old, and he has since welcomed a great-grandson into the family. Utley, a longtime myeloma survivor, is looking forward to celebrating his 80th birthday in September.

His initial chemotherapy treatment eradicated all three lesions, and he underwent two transplants of his own stem cells soon afterward. Utley, who retired from Remington Arms after 25 years, has never gone into remission, but his myeloma remains under control, thanks to monthly maintenance treatments.

“Mr. Utley was diagnosed more than 16 years ago and is still doing well,” said his doctor, Frits van Rhee, M.D., Ph.D. “His cases illustrates that myeloma patients can have excellent long-term outcomes even if remission is not achieved or relapse occurs which is a testament to the ever increasing arsenal of new treatment options. He is a wonderful patient and person and it is our privilege to be able to look after him.”

Utley has lived with myeloma for 16 years. He visits the Myeloma Center monthly for maintenance treatment in the infusion clinic, receiving Darzalex (daratumumab) and immunoglobulin replacement therapy (IVIG). Three years ago, when his levels started rising and tests revealed a lesion on his back by his ribs, treatment included Pomalyst.

His doctor sees him every three to six months, and Utley usually undergoes a bone marrow test during those visits. He has had 43 of them so far.

“But Dr. van Rhee said I don’t hold the record for the most bone marrow tests,” he said, chuckling. “There’s another patient who has had almost twice as many as I have.”

Utley is grateful for the care the UAMS Myeloma Center has provided him since his diagnosis.

“Dr. van Rhee is wonderful,” he said. “He is considered to be among the top physicians in his field, and I am blessed to live so close to the Myeloma Center. It really is a state-of the-art facility,” he said. “They take my blood when I arrive and in less than an hour, the results have come back and 30 different tests have been run on it. It is amazing that they can do that.”

He said the center also employs a stellar staff.

“In all my time at the UAMS Myeloma Center, I have never had even one nurse I could say anything bad about,” Utley said. “They are all so caring, kind and professional.”

His own experiences explain why he has encountered many patients over the years from across the nation and the world coming to the center for treatment.

“I’ve met people from Germany, Ireland and Canada in the waiting rooms and clinics,” he said.

Utley’s immunoglobulin replacement therapy (IVIG), which he receives through his port, takes 2.5 hours once a month. Through the years, he has watched as the science behind his medical care continues to advance.

“When I first started my treatments in 2016, my daratumumab therapy took eight hours as I was closely monitored for reactions and then it dropped to 90 minutes,” he said. “But this past February, they began giving me that treatment by an injection instead of infusion. So now I get my IVIG therapy first and then after the daratumumab shot, I just wait 15 minutes and I’m good to go.”

Utley says the time he spends at UAMS is worth it in exchange for all the extra years he has lived.

After retiring from Remington, Utley began a home construction business but retired again about nine years ago. His routine includes walking at least two miles a day, four days a week at his local community center.

“I would say my health is excellent,” Utley said. “My only issue is neuropathy in my feet and hands due to the chemotherapy. Dr. Lee Archer has greatly helped with that, and the neuropathy is somewhat managed by medication. ”

Archer is a neurologist and chairman of the Department of Neurology at UAMS.

“Since my first chemotherapy treatment in 2005, I have followed the current pandemic guidelines of wearing masks, hand sanitizing and avoiding any known viruses or illnesses. I know they work.”

What about that initial sore on his thigh that sparked him to seek treatment and led to the early detection of his myeloma?

“It was not connected to the disease at all, and it eventually healed on its own,” Utley said of the blessing in disguise.