Long-Term Myeloma Survivors Gather for ‘Family Reunion’

By Jon Parham

Bart Balogie, Myeloma Institute founder and director, speaks during the Myeloma Survivor Dinner on May 5.
Bart Balogie, Myeloma Institute founder and director, speaks during the Myeloma Survivor Dinner on May 5.
Barlogie (left), pauses for a photo with myleoma survivor Hosea Long, UAMS associate vice chancellor for human resources.
Barlogie (left), pauses for a photo
with myleoma survivor Hosea Long, UAMS associate vice chancellor for human resources.
UAMS Chancellor Dan Rahn, M.D., welcomes guests to the Myeloma Survivor Dinner.
UAMS Chancellor Dan Rahn, M.D., welcomes
guests to the Myeloma Survivor Dinner.
Peter Emanuel, M.D., director of the Winthrop P. Rockefeller Cancer Institute speaks at the Survivor Dinner.
Peter Emanuel, M.D., director of the Winthrop P. Rockefeller Cancer Institute speaks
at the Survivor Dinner.
Twenty-plus-year myeloma survivor Ray Washtak of Montana, shown here with his two Labrador Retrievers, also attended the dinner.
Twenty-plus-year myeloma survivor Ray Washtak of Montana, shown here with his two Labrador Retrievers, also attended the dinner.

He had been diagnosed with multiple myeloma, a cancer of the blood’s plasma cells, and told that he had just months to live. Fearing the worst, the retired wildlife biologist from Montana came to the Myeloma Institute, where he immediately bonded with other patients. Those connections helped him solidify his decision to move forward with treatment at the Myeloma Institute, and they have endured ever since.

Now more than 20 years later, he was back for the institute’s long-term survivor dinner May 5. He said prior to the event he hoped to see old friends and make new ones in a group that he and others have said is not unlike a family.

“I think there’s a special bond among myeloma patients,” he said, contrasting it with other cancer patients he comes in contact with as a volunteer at the cancer center in his home of Kalispell, Mont. “I think it’s because of the nature of the disease – that it’s so individualized that everyone has a different experience – and one that seems different from other types of cancer – so we bond together.”

This was the second time the Myeloma Institute hosted a Survivor Celebration for those who have survived 10 or more years. More than 60 patients from all over the United States traveled to Little Rock for the event, though that represents just a few of the institute’s patients who qualify. The milestone also is dramatic for a disease that, when the institute opened in 1989, had an average survival time measured in months.

“It is truly an honor to bring together survivors so they can reconnect with each other and celebrate with caregivers and institute staff who have been on the journey with them,” said Bart Barlogie, M.D., Ph.D., director of the Myeloma Institute. “This event also gives us a chance to recognize the contributions made by our patients, scientists and clinicians toward extending survival and curing myeloma.”

UAMS Chancellor Dan Rahn, M.D., and Peter Emanuel, M.D., director of the Winthrop P. Rockefeller Cancer Institute, also greeted survivors and supporters of the Myeloma Institute. They praised the accomplishments of the Myeloma Institute and its staff.

The 61-year-old Washtak, since his 2007 retirement, spends much of his time with his two Labrador Retrievers and plays golf. But he also spends a lot of time volunteering at the local cancer center. He always takes his labs, who will soon be certified therapy dogs.

“I’ll do anything I can: greet patients, help them to and from their cars, keep the coffee pot full and talk with the patients and their caregivers,” he said. “My volunteering has everything to do with my experience with myeloma. It is my way to try to help others.

“I distinctly remember my first experience in Little Rock. I wanted to talk to someone who had survived this.”

He had come to the Myeloma Institute after hearing he may only have a few months to live. He wanted to see his 13-year old daughter’s 14th birthday.

He found out about the institute, he said, through his sister, Kathy. While she was making flight plans to visit him soon after the diagnosis, a conversation with a travel agent turned to multiple myeloma. The travel agent had a relative who had been a patient at the Myeloma Institute and praised its expertise in a disease not well known at the time.

“You can call it coincidence or luck or whatever that my sister called that particular travel agent when she could have called many others, but I think it was the good Lord who led me to Little Rock,” Washtak said.

Following extensive tests, he began the treatment program in August 1991 at the institute. He was part of the Total Therapy 1 program, the institute’s first multiple myeloma clinical trial. Today, the Total Therapy 4, 5 and 6 clinical trials continue with treatment driven by the specific genetic fingerprint of the tumors.

Washtak has been in remission since his second round of treatment with a transplant of his own bone marrow and blood stem cells following high-dose chemotherapy and total-body radiation in summer 1992. He now returns to the Myeloma Institute for an annual checkup.

He returned for the event with his two grown daughters who never got to accompany him to Little Rock for treatment all those years ago.

“I’m excited about coming to Little Rock to celebrate all of the institute’s success,” he said, rattling off names of fellow patients he hoped to see – friends he met throughout the years at the Myeloma Institute, while he was being treated and then later when he would come for his regular checkups.

“It is amazing the hope and success the Myeloma Institute offers to patients from all over the world and it’s a credit to their drive and determination and commitment to finding a cure for myeloma.”

Washtak said he hopes to be a similar comfort to the cancer patients he visits with now. “I remember all the fears and the worries and the anxieties and the sleepless nights,” he said. “There is a lot of hope out there with so many advances in diagnosis and treatment.

“With multiple myeloma, it’s no longer what we felt it was in 1991 – there are so many options, so many new and improved protocols, and it’s because of what they’ve accomplished at the Myeloma Institute.”