November 1, 2016

Blog Gives Multiple Myeloma Patient Way to Share

Oct. 27, 2016 | Sean Murray of Kimberling City, Missouri, was working a stressful job in November 2008.

His project list was long and deadlines were coming due. So, yes, he noticed the pain in the upper middle part of his back. But the 49-year-old figured it was a pinched nerve or a pulled muscle and decided it was just another annoyance he’d have to deal with.

Ten days after the pain started, it became too big to ignore. At this point, Murray had been sleeping in a recliner because it hurt to lay down. He dragged himself to his primary care physician who ordered x-rays and referred him to an orthopaedic surgeon.

UAMS Myeloma Center

Gareth Morgan, M.D., Ph.D., director of the UAMS Myeloma Center shows patient Sean Murray images of chromosomes and how abnormalities can effect treatment and disease.

“I had a feeling I was in good hands. The surgeon had the same name as an actor who plays Superman. He was, in my mind, Dr. Superman,” Murray said.

Results from an MRI and CT scan led the surgeon to suspect Murray had an advanced case of multiple myeloma.

Murray was asleep when the doctor called that evening. Karen, his wife, answered the phone.

“He told her he was going to refer me to one of the best places in the world that treats multiple myeloma. She automatically started to think of well-known hospitals like MD Anderson or the Mayo Clinic,” Murray said.

He says his wife’s first reaction to the doctor was “Are you kidding?” when he recommended a facility in Little Rock.

“There isn’t another institute like it in the world,” said Gareth Morgan, M.D, Ph.D., professor and director of the UAMS Myeloma Center. “We have lots of patients, half of which come from outside of Arkansas. We were the first people who could make the claim that we can cure myeloma.”

Gareth Morgan UAMS

Gareth Morgan, M.D., Ph.D., director of the UAMS Myeloma Center.

Morgan says the survival rates are twice as good at UAMS as they are in other myeloma treatment centers. Over a ten-year period, 50 to 60 percent of UAMS myeloma patients are alive and well, compared to 20 to 30 percent in other comparable facilities.

Morgan attributes it to the use of a combination of different classes of drugs: one that enhances the immune system, one that targets the proteosome and antibody therapy. Morgan describes the antibodies as silver bullets that target only cancer cells, leaving healthy parts alone and limiting side effects.

“It’s an interesting example of how taking science and genetics into the clinic has allowed us to first understand the disease, then target treatment to the genetics of the disease and improve survival,” Morgan said. “Focusing on that is what we believe gives us success.”

For his treatment, Murray moved to Little Rock for ten months. It was a challenging time, he said. His wife was with him whenever possible. She was an elementary school music teacher, in graduate school at night, and was taking care of their two daughters, Katie and Elizabeth, who were 11 and 5 at the time. He was happy to have a close network of family and friends from all over the country helped him when his wife was with the children in Missouri.

Sean Murray UAMS

The Murray Family (left to right: Karen, Sean, Elizabeth and Kate) live in Kimberling City, Missouri. Sean says thanks to UAMS, he is able to spend more years with his family.

When Murray went home and began his three-year chemotherapy maintenance period, he started a blog to keep his friends and loved ones updated without having to repeat his story several times. He called it Myeloma Youreloma.

“It began as a place where people could check in to see how I was doing and what my thoughts were,” Murray said.

His blog caught the attention of editors at The Myeloma Beacon. Since then, Murray had the opportunity to write a patient perspective on their website. He’s written more than 75 entries. Murray says his goal is to encourage other myeloma patients to not give up hope.

“This disease is willing to take everything away from you if you let it,” Murray said. “It’s as if the sun stops shining and you lose passion for things you once cared about. It’s an all-consuming disease, if you allow it to be.”

Murray says during his darkest times, his wife and two children are his motivators to beat his illness. He and Karen adopted their daughters from China. Katie had been left alone on the steps of a Buddhist temple. Liz had been left in a factory courtyard before they were taken to orphanages.

“One thing that keeps me going when I want to give up is the sad thought of leaving my daughters. I don’t want them to be abandoned again. I tell myself, ‘I may not be able to do this for Sean Murray. But I would do anything for Kate and Liz’s dad and Karen’s husband.’ Thanks to UAMS, I am still here with my family.”