As a 29-year-old teacher looking forward to the birth of his first child, Tim suddenly found himself in a fight for his life against a rare form of non-Hodgkin lymphoma. A specialist at Memorial Sloan Kettering enrolled Tim in a clinical trial testing a new treatment, allowing him to resume his life.
- Tim was diagnosed with stage IV anaplastic large cell lymphoma.
- His personal physician recommended he get a consultation at MSK.
- MSK oncologist Matthew Matasar enrolled Tim in a clinical trial testing a new treatment.
- Today, Tim is cancer free and recently welcomed his second child with his wife.
In October 2011, Tim Waples and his wife, Melissa, were eagerly awaiting the birth of their first child. It was a hectic time. Melissa’s doctor had ordered several months of bed rest after a troubling episode in the pregnancy. Tim, then 29, had just begun a new year as a special education teacher at an elementary school in Passaic, New Jersey. So when he noticed a rash and some swelling on his back, it was the least of his concerns.
When the symptoms of what seemed like a benign cyst didn’t go away, Tim had blood tests and biopsies at a hospital in New Jersey. He was diagnosed with stage IV anaplastic large cell lymphoma (ALCL), a rare but aggressive type of non-Hodgkin lymphoma.
“I was super tired with no strength, and it was really wearing me down,” Tim says. The anxiety was heightened by the timing and the circumstances of both he and Melissa being largely incapacitated. To address this, Melissa temporarily moved in with her parents, and Tim’s parents came up from Florida to stay with him at the family’s home in Nyack, New York.
Tim initially planned to be treated in New Jersey with chemotherapy. He braced himself for an arduous regimen. But his primary-care physician encouraged him to seek a second opinion, and she had someone specific in mind: Memorial Sloan Kettering medical oncologist Matthew Matasar. She had trained under Dr. Matasar at Columbia University Medical Center and knew of his expertise in rare forms of lymphoma.
Tim met with Dr. Matasar and immediately knew he had come to the right place.
“I felt very comfortable within the first five minutes of being in the room with him,” Tim says. “He said I was the perfect candidate for a clinical trial that was just starting, and he explained everything in detail. He even called Melissa to make sure she understood what it entailed and to answer all her questions.”
A Novel Treatment
Although Tim’s condition was grave — CT scans showed that tumors were rampant across his entire trunk — Dr. Matasar was confident that the treatment being tested in the trial would wipe out the cancer. It involved using a new drug called brentuximab vedotin (Adcetris®).
Standard treatment for ALCL is a chemotherapy cocktail known as CHOP, which involves four drugs. Brentuximab vedotin had already been approved as monotherapy (meaning it is given alone) for patients whose ALCL had returned after CHOP. The clinical trial would evaluate the effectiveness of substituting brentuximab vedotin for one of the four CHOP drugs in newly diagnosed patients like Tim.
“Tim was very sick and needed immediate treatment, so the timing was perfect with the trial,” Dr. Matasar says. “He was young and in great physical shape, so I was optimistic we could beat the cancer. I thought a treatment plan incorporating brentuximab vedotin was definitely going to skew the odds in his favor.”
The approach involved six cycles of the combination, given once every three weeks. Tim began to feel better soon after treatment began, and he was amazed when Dr. Matasar showed him a scan taken after only two cycles. “The old scans looked completely black from my throat to my pelvis. After two treatments, I was able to see all of my organs, and there was not much cancer anywhere.”
Throughout the process, Dr. Matasar constantly updated Melissa to help her feel connected to Tim’s treatment and his healing. “I didn’t want the burden of communication to fall completely on Tim’s shoulders, so I would call her after every treatment to let her know how he was doing and that everything was going according to plan.”
Tim’s health improved enough over the first few months that he was able to be present for the birth of his son in January 2012. The only significant side effect was nausea from the chemotherapy, which he alleviated with his own personal elixir that seemed to do the trick.
“I drank a lot of chocolate milk to coat my stomach,” he says. “I would have one every time I got home from treatment. I’ve been telling everyone who goes on chemo to try it and see if it helps.”
Getting on with Life
Tim didn’t let the illness affect the life he had always planned. He says Dr. Matasar gave him the confidence that everything was going to be OK. “I just stayed focused on the future and thought about my next step once I beat this.”
Today, five years later, he and Melissa have two sons, the second born in 2016. Tim recently earned a master’s degree in educational leadership and hopes to become a supervisor in the school system. He still sees Dr. Matasar twice a year to make sure the cancer hasn’t returned, but his outlook is excellent. “At this point, I believe he’s been cured,” Dr. Matasar says.
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Tim’s experience underscores the importance of being treated at an institution with vast experience in rare cancers, says Dr. Matasar. MSK offers one of the largest and most innovative clinical trial programs for lymphoma in the world.
“There are diseases such as ALCL that are individually rare but collectively common,” Dr. Matasar says. “When you’re giving standard treatments for rare diseases, you may not be giving patients the best chance to succeed. A clinical trial can make that difference.”
Tim sometimes looks back on the experience and can hardly believe it happened. “It’s just something that was dealt with quickly because of the people at Memorial Sloan Kettering, and here I am back to normal.”