William Graves — Waldenström’s Macroglobulinemia Patient Story

Associated Press sportswriter Will Graves was covering the 2014 Winter Olympics in Sochi, Russia, when he noticed some worrisome symptoms: fatigue, loss of appetite, headaches, and weight loss. At first, he blamed it on jet lag, “horrific food,” and long workdays. It wasn’t until the final day of competition that he realized something was seriously wrong.

“I decided to take the gondola down the mountain to the Olympic Village, but it took forever to get up the steps,” says Will. “I had to keep stopping to catch my breath. My heart was beating a mile a minute.”

Back in Pittsburgh, Will saw his primary care doctor who ordered blood work. The next day he got a shocking call. “My doctor told me to go straight to the emergency room,” says Will.

The Monroeville resident and father of two young children went to nearby UPMC East where he learned his hemoglobin — which transports oxygen throughout the body — was dangerously low. Instead of a normal hemoglobin level of 12 to 14 for someone his age, Will’s hemoglobin level was 3.5.

“My body was operating at about 25% capacity. I was walking around with the blood oxygen level of someone standing atop Mount Everest,” he says.

A rare form of blood cancer

After receiving blood transfusions and a sound sleep at the hospital, Will woke up the next morning feeling better. He was surprised when Dhaval Mehta, MD, a medical oncologist and hematologist at UPMC Hillman Cancer Center in Monroeville, walked into his room and introduced himself.

“I was completely floored,” says Will. “I thought I was just anemic, but there I was talking to an oncologist. But Dr. Mehta assured me everything would be fine.”

After additional tests, including a bone marrow biopsy and scans, Will was diagnosed with Waldenström’s macroglobulinemia (WM) — a rare, slow-growing form of blood cancer that causes too many white blood cells. It’s also known as lymphoplasmacytic lymphoma, a form of non-Hodgkin’s lymphoma.

“It prevents red blood cells from absorbing oxygen,” explains Will. “You usually die with it, not from it.”

Managing a disease with no cure

According to the American Cancer Society, as many as 1,500 people are diagnosed with WM each year — most are in their 60s and 70s. Although there is no cure, treatments can help manage symptoms. Will’s case treads in unknown territory because the disease strikes people around age 70. At age 47, Will was in his seventh year of treatment.

“There are times when I don’t feel great. But nothing comes remotely close to the way I felt at the time of my diagnosis,” says Will.

Will initially went through 12 cycles of treatments over the course of a year at UPMC Hillman Cancer Center in Monroeville — located just minutes from his home. The three-drug, chemo-free regimen included rituximab, bortezomib, and steroids, which attaches to the lymphoma cell and tells it to die.

He completed his treatment on Labor Day 2015 and remained in remission until June 2018. He underwent the same drug treatment, although this time it was 6 cycles spaced out over the next year. His second remission lasted about a year — until fall 2020.

At the suggestion of Dr. Mehta, Will went to see Alison Sehgal, MD, a hematologist and medical oncologist specializing in stem cell transplants/CAR-T therapy, at the Mario Lemieux Center for Blood Cancers at UPMC Hillman’s Shadyside location. Since his body is developing a resistance to the first drug combination, she recommended he begin taking a promising new drug class- BTK inhibitor known as acalabrutinib, which is taken in pill form.

Dr. Mehta also presented Will’s case to a national board whose members agreed that he should take the drug. If it stops working or if pills need to be stopped, he will benefit from a stem cell transplant.

“Now all I take is one pill twice a day,” says Will, who began taking the oral medication in March 2021. “The medicine is working great. My biggest challenge now is remembering to take the pill at night.”

Back to the Olympics

Will says he feels fortunate he moved to Pittsburgh with his wife in 2011 to cover the city’s sports teams. He’s also grateful that Dr. Mehta walked into his hospital room that day in 2014.

“If you’re going to get cancer, there’s no better place to be than Pittsburgh and UPMC Hillman Cancer Center,” he says. “I could not be in better hands. Dr. Mehta pinned down what the problem was and how to solve it.”

In 2021, Will was off again to cover gymnastics at the Tokyo Olympics — his second summer Olympics and fourth overall. During his 20-day stay, he reveled in his new-found energy.

“I couldn’t go to sleep at night. I wanted every day to last forever,” says Will. “I’ll never forget how awful I felt in Russia trying to climb those steps. In some ways, a part of me is still stuck there on that mountain.

“I don’t want to take anything for granted,” he adds. “I’m a cancer survivor who takes a pill and lives a completely normal life. There’s literally nothing I can’t do. I’m pretty lucky.”