LGL Leukemia: Managing a rare form of cancer

It’s a rare form of leukemia with just about 1,000 cases diagnosed in the U.S. every year. There is no cure for LGL leukemia, but doctors say many cases are slow-growing, so patients can live long lives and can be treated with – among other things – drugs that are currently FDA-approved for rheumatoid arthritis.

Chris Maslyk and his family are spending as much time as possible outdoors this summer. Even their favorite backyard game would have required more energy than Chris had.

“I was having trouble walking up a flight of stairs. I would be completely out of breath,” Chris remembers.

Blood tests showed Chris had an abnormally low hemoglobin level. It was a sign of something serious. Doctors diagnosed Chris with a form of leukemia he had never heard of before – LGL leukemia.

“LGL stands for what the cells look like. So, they’re large. They have these granules in them and they’re kind of a white blood cell called a lymphocyte,” explains Professor of Medicine and Director of the UVA Cancer Center, Dr. Thomas P. Loughran, MD.

Dr. Loughran was a fellow at a hospital in Seattle when he and his colleagues discovered this rare cancer. Now, he’s one of the few in the country specializing in the condition, which causes a person’s immune system to overreact.

“The problem is that their immune system is too strong. These LGL cells are killer cells. We use medicines to turn off the immune system,” Dr. Loughran further explains to Ivanhoe.

Doctors used one of the drugs, methotrexate, that are used to treat rheumatoid arthritis. Unfortunately, it had no impact on Chris, who kept getting sicker. Two drugs later, doctors found another immunosuppressant – Cytoxan – that worked.

Chris expresses, “I’m my same, normal self again, which I’m enjoying. It was a long time coming.”

Chris is not considered cured, since there is no cure for LGL leukemia, but he is able to manage it long-term, like a chronic disease. For more information, the University of Virginia cancer center’s LGL leukemia registry has more on the condition and the latest research.