Lymphoma: Jeff's Story

Ineligible for a stem cell transplant, CAR T cell therapy saved Jeff Evans' life.

Printer-friendly version

Jeffrey Evans 

Springfield, Illinois 
Diffuse Large B-Cell Lymphoma (DLBCL)
CAR T Cell Therapy 2019
Many thanks to the American Society for Transplantation and Cellular Therapy for helping us share Jeff's story.  

If there is one thing Jeff Evans knows, it's sailing. For him, one of the most reliable sources of happiness in life is “being on the water with a strong breeze, challenging myself.” So, imagine his joy, in November 2014, when he took off from the Canary Islands on one of the 150 ships crossing the Atlantic Ocean towards Saint Lucia. Jeff was part of a six-man team, mostly "lake sailors," hoping to achieve a record time.  

While they were stocking up and preparing for the trip, Jeff experienced a strange swelling in his feet. He remembers: “That last night before I left, I saw how swollen my feet were and I thought about not going… but I didn't want to disappoint anyone.” Still, he reasoned, if he needed help, he would have it on hand: in addition to Jeff, who had recently retired as an architect and general contractor, the group included three doctors. Only later, Jeff says, did he learn that “I crossed the ocean with stage 4 lymphoma and my bone marrow was 90% affected.” Surprisingly, this didn't stop him. As Jeff recalls, “We finished 12th out of 150. Not bad for a group of lake sailors!” 

Still, when he and his wife, Julie, returned home from St. Lucia, reality came crashing down. He was quickly diagnosed with non-Hodgkin lymphoma, which was eventually revealed to be follicular lymphoma. After undergoing typical treatment, followed by several years of remission, his health began to deteriorate once again. “June 2019,” says Jeff, “I noticed pain in my back and stomach. He was planning to go backpacking in July with friends. Instead, I found out that he had diffuse large B-cell lymphoma (DLBCL). “Jeff's original follicular lymphoma had transformed into this more virulent strain of lymphoma.

The standard of care for DLBCL is an autologous stem cell transplant, and Jeff and Julie wondered where they should go for this treatment. “My son and his wife were near the MD Anderson Cancer Center. My oncologist said Houston would work,” says Jeff. And they left.  

At MD Anderson, Jeff was reassured by the confidence of Dr. Jason Westin, chief of the Aggressive Lymphoma Research Team, who, when Jeff's lymphoma increased, promised that he "had many 'arrows in his quiver' to shoot against this disease. Unfortunately, the first two arrows (autologous transplant and a targeted immunotherapy clinical trial) were not tested because, as Jeff says, “Dr. Westin just couldn't get me into remission for those treatments to be effective.” 

During that time, Jeff and Julie lived with their son Michael and his wife, Lisa, who had generously invited them into their two-bedroom apartment. While Jeff struggled to survive, Michael and his wife were expecting his first child, Jeff and Julie's first grandchild. “At that point,” Jeff remembers, “I was getting very, very weak. It was September 2019… The baby was coming… The boxes were piled up… Julie and I recognized that we needed to give our son space.” They moved into their own apartment inside a local residential facility for blood cancer patients.  

Soon, Jeff was offered another arrow in Dr. Westin's arsenal: CAR T cell therapy, which turned out to be the miracle solution they were hoping for. However, as soon as Jeff's treatment was completed, the accumulated stress caught up with Julie. Jeff reflects, "I didn't ask often enough, 'How are you?' "We didn't have the difficult conversations that a patient and their caregiver need to have." Looking back, he wishes he had sought Julie's support from a social worker or support group.  

Her daughter Katie sprang into action and took Julie home to Chicago for some valuable rest and recovery. Reflecting on this gift, Jeff says, “Our kids really stepped up and I can't express my gratitude enough.”   

A month after CAR-T, Jeff and his son Michael met with Dr. Westin to hear the results of his CT scan. “You had a complete response,” Dr. Westin told them. After five years of struggle and insecurity, a “complete response” seemed almost incomprehensible. Jeff remembers: “I was paralyzed, my son and I got out of there. I was still very, very weak, I couldn't walk up a whole flight of stairs without stopping. They told me I was cancer-free, but I didn't feel well at all.” 

Fortunately, Jeff soon caught up with his good luck. Always a lover of nature, he decided to give his body back its full powers. In the winter of 2020, he was determined to ski before COVID 19 closed the slopes. As he remembers, “I was at the top of the mountain and skied until they closed the mountain on March 15.” 

Nearly four years of clean scans later, Jeff says, “I am the poster child for this treatment. Genetically modifying my own cells so that they can identify and attract cancer cells and kill them is a miracle. “It has given me a second life.”  

Jeff embraces that second life with vigor. “These days,” he says, “I'm in the mountains hiking or fishing and my son calls Julie and says, 'Mom, Dad shouldn't be doing this, he's 70 years old!'” The family is delighted with Jeff's adventures.  

Jeff and Julie also enjoy a new depth of communion. As Jeff describes: “After what my wife and I have been through, we are more in love than ever. We spent time hiking or car camping. “Often it is just the two of us and our love has grown.” 

Jeff ends our conversation by saying, “When I'm in nature, I like to stop and look around, really look at the wildflowers or the landscape, and if I can do that every day and be thankful, it's magical. We recently hiked up Silver Lake, a steep and difficult hike, and along the way we met another couple our age. As we went up, the entire slope was full of lupine flowers, a blanket of purple. “We all agreed, we had never seen anything like it.”  

Whether he is at sea, skiing, or lazing by a meadow, for Jeff, life is one amazement after another. 

The American Society for Transplantation and Cellular Therapy (ASTCT), formerly known as the American Society for Blood and Marrow Transplantation, is a professional society of more than 2,200 healthcare professionals and scientists from over 45 countries who are dedicated to improving the application and success of blood and marrow transplantation and related cellular therapies. ASTCT strives to be the leading organization promoting research, education, and clinical practice to deliver the best, comprehensive patient care.