Patients, doctors bring awareness to multiple myeloma

ST. LOUIS COUNTY, Mo. ( — March is multiple myeloma month. It is the second most common blood cancer in the U.S., according to Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine. Researchers there say the five-year survival rate remains below 50 percent, and in Missouri alone, an estimated 560 new cases will be diagnosed this year, with 270 people dying from the disease.

Robyn Long understands the complications of the disease all too well.

“Oh my gosh, it’s been a journey,” said Long. “In retrospect, I can say, yeah, there were some really off things. The worst thing, though, I had been battling back pain for eight months. I was also tired a lot. But at the time I didn’t think I was sick.”

Back in 2002, Long was five years out from a cervical cancer diagnosis when she learned she had a new battle to fight – multiple myeloma. Now, she has spent the past 14 years fighting.

“Remission is a word to me because I used to get hung up on that, ‘Why can’t I get into remission?’ But, I’m 14 years out and I’m still here so it’s a word to me. It’s my story. Every myeloma patient is so different,” said Long.

Long has beaten the survival odds. She is also an unlikely patient, as she is a white woman who was diagnosed in her 40s. According to the American Cancer Society, African Americans are two times more likely than Caucasians to be diagnosed with the disease and doctors said men and older Americans are also more at risk.

Researchers are using data from patients in the St. Louis area to try to understand why.

“The focus at Washington University to harbor our strength and access to the African American population to figure out both why they are more predisposed to develop the disease and also to develop better treatments for this disease,” said Dr. Ravi Vij, MD, of Siteman Cancer Center.

They are also focusing on immuno-oncology, which works with a patient’s own immune system to help control the cancer.

“We have made tremendous progress. It’s a disease for which the best is yet to come. Washington University has played a key role in developing the drugs that have come to the forefront in the past 10-15 years,” said Dr. Vij.

For Long, during her decade-and-a-half battle, she, too, has seen a great evolution in diagnostics and treatments.

“I don’t fit in the demographics at all. That’s why I say it’s such a personal cancer because no two patients are alike. Everybody is different. Everybody has their own story. Everybody’s outcome is different. Everyone handles treatments differently. It’s a very individualized cancer,” said Long.

On a personal level, she is sharing her story to encourage other patients struggling with pain or fatigue to not give up and keep searching for answers from their doctors.

“I feel very lucky. I’m trying to figure out what God has for me because I’m still here and there are so many that aren’t,” said Long.