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Alan Stephenson uses the Facebook group "Multiple Myeloma Warrior Community" to help himself and others in the myeloma journey. Image by Evan Lewis

Myeloma Warrior Offers Support to Others in Fight

March 14, 2025 | Alan Stephenson has taken his myeloma diagnosis and turned it into a positive for himself and others in this situation.

“One of the reasons I’m passionate about being an advocate is to let people know what to expect. The fear of the unknown is often a lot more than what you actually face,” he said.

A financial advisor who lives near West Monroe, Louisiana, Stephenson is the creator of the Facebook support group, “Multiple Myeloma Warrior Community.”

“I want it to be a place where all people can come together and love and support each other, along with sharing knowledge about this illness,” Stephenson said.

The group has grown to more than 8,900 members since its creation in March 2023.

“I thought it would take a year to get 1,000 members,” he said.

Stephenson’s path to advocacy began with his own diagnosis.

“I had been in pain for a long time, but I thought it was old injuries coming back to haunt to me because I was hard on my body when I was younger. One day during the summer of 2015 I sneezed, and it put me on the floor. I injured my back, and I thought I had fractured a rib, but I didn’t go to a doctor,” he said.

“In March 2016 I was home alone, but I was sick,” he continued. “I got in the shower, started coughing, and I went down. After a few minutes I was able to stand up, get dressed, drag myself to my truck and go to work.”

That episode finally prompted Stephenson to seek help.

“The next day I saw my primary care physician. I had two MRIs scheduled, and I asked what the chances were that I had bone cancer.”

The MRIs revealed a finding of multiple myeloma, along with a collapsed vertebra.

“When I was told it was multiple myeloma, they said go to the University of Arkansas for Medical Sciences [UAMS] — it’s the best place in the world,” said Stephenson. “I’d never heard of multiple myeloma. I thought it was no big deal because it wasn’t brain or pancreatic cancer. I came to UAMS and found out I was wrong.”

Stephenson describes his feelings when arriving at the UAMS Winthrop P. Rockefeller Cancer Institute.

“When they called me and asked to me come, I said OK and hung up. I didn’t ask them anything. My wife was very upset with me,” he said. “When we got there, we were terrified because we didn’t know what to expect.”

Myeloma Center clinical director Frits van Rhee, M.D., Ph.D., is Stephenson’s physician.

“I love Dr. van Rhee,” Stephenson said. “Everyone I’ve dealt with at UAMS — from the doctors to the people working in the pharmacy to the people who clean — are very friendly and supportive. One of the best things about UAMS are the volunteers who help the new patients. We had a volunteer who took my wife and I around the hospital when we got there, and it was a blessing.”

Stephenson’s current treatment includes meeting with a local oncologist every four to six weeks along with quarterly visits to UAMS.

“UAMS does more testing than anyone I’ve seen — they keep a close eye on their patients,” he said.

Throughout his cancer journey, Stephenson says he has been searching for a community of myeloma survivors that supports each other. Eventually, he decided to create it himself.

“Patient advocacy has always been a big thing for me. I saw one decent-sized myeloma group online, and it was very depressing,” he said. “It seemed like nothing but bad news, and if anything about prayer or spirituality was mentioned you were kicked out. I believe for a lot of people that’s a very important thing.”

His family is concerned about how much administering the support group takes out of him.

“My wife wondered whether being involved with the group would get to me, and sometimes I have to step away for a couple of days and take a break,” said Stephenson.

Ultimately, Stephenson says he gets as much from the group as he gives to it.

“One message I try to give people is everyone is going to go through some sort of difficult situation in their lifetime. We can either be victims or victors over our circumstances — it’s our choice. The people who love us are watching to see how we react. We set the example.”