Non-Hodgkin Lymphoma: Robert's Story
Robert Scanlon
West Hartford, Connecticut
CAR T-cell therapy in 2023
Non-Hodgkin Lymphoma
Many thanks to Dana-Farber Cancer Institute and the American Society for Transplantation and Cellular Therapy for helping us share Robert’s story.
As we enter 2026, what are you focused on, what are you grateful for?
Recently I was reading an issue of the AARP Magazine, and one of the articles described CAR T-cell therapy as “the future of cancer treatment.” When I read that, I felt grateful to have had access to CAR T-cell therapy, together with Keytruda infusions, through an early clinical trial. My oncologist, Dr. Caron Jacobson, and her team at Dana-Farber, made that possible for me. Now, two years later and healthy again, I’m back to running and camping and doing the things I love with my family.
I’m grateful for every day I have with my wife Kathy and for the daily pleasure of talking with her. And I am grateful for the conversations I have with my young adult children (twin daughters Lisa and Nancy, 23; and son, Bobby, 19) about all the things they are experiencing for the first time – like work, relationships, college and searching for their careers. Overall, I have more gratitude for my health and appreciation for time with the people I love. I am lucky!
Just before the holiday season, in 2022, things in your world were very different. Can you describe that time?
It was a difficult period. For one thing, at the end of October 2022, my mother passed away. During that month, I was going back and forth from Connecticut to visit her in the Bronx, where she was in the hospital. Being with her as she experienced the last days of her life and then gathering our extended family for the services was very rough. Throughout, I felt tired, out of shape, and run down. 
At first I attributed my exhaustion to taking care of my family and my grief. Generally, healthwise, I’m a person who is used to things resolving themselves, and recovering quickly. I am an avid runner and I even ran the Hartford half marathon that month. But around this time I also discovered two growths on my sternum. I waited for them to go away, but they didn’t. When I finally told my wife Kathy about the growths, at the end of November, she told me “Get in the car. We’re going to the doctor.” It was a reality check. I wish I’d pulled the trigger on that conversation earlier.
My primary care doctor examined me and said, “I think it’s a fatty lipoma, but let’s schedule a CT scan to be sure.” Luckily, no one dismissed me, or said, “Oh you're getting older, this is just an effect of age, you could get cosmetic surgery, etc.”
When I reviewed the results of the CT scan with a thoracic surgeon, he told me, “You have a tumor growing around your sternum.” That was the moment I knew how serious this was. I was first treated at Hartford Hospital as an outpatient and I’m grateful to all the people there, and their good care, but the system was moving very slowly, perhaps because of the holidays.
That is difficult, frightening news to hear at any time, but especially over the holidays. What do you remember most from that time?
As soon as we knew what we were dealing with, my wife began looking for the best place to be treated. She is an excellent patient advocate, fierce about seeking out care for our whole extended family. From the beginning, she wanted me to get a second consultation at Dana-Farber. But unfortunately, the tumor was growing so quickly that it wasn't possible.
My tumors were collecting fluid, to the point of pressing on my heart and lungs. It got so bad that, in order to breathe, I had to sit up while I slept. At that point, my wife once again said “Get in the car,” and I was admitted into the hospital via the ER. I was inpatient for ten days, across Christmas 2022. Inpatient, everything moved more quickly; we got the biopsy done, and they did another scan which showed I had Non-Hodgkin Lymphoma. I did my first line of chemo there, at Hartford, over the course of six inpatient stays that lasted through the spring of 2023.
During that first course of treatment, how was your daily life impacted by the changes in your stamina and health?
I was run down, my hair fell out, but I was still able to work. My employer, Travelers Insurance, was very supportive. My manager got me permission to work from home while I was immune compromised. I basically went back into a 
solo second pandemic. At the time I managed a team of about 12 people, and they were supportive as well. They made it easy for me to still be a meaningful part of the operation, while working from home. I’ll always be grateful for that. Because of their help, I was able to get through that first line without taking short-term disability.
In April of 2023, I rang the bell at Hartford Cancer Center. But, at my first follow up scan, we discovered there was still active cancer in my chest. That was tough to hear. Again, Kathy was determined to find the best care. One possibility was to do targeted radiation at Hartford and I had gone so far as to get tattooed for treatment, when we finally got an appointment with Dr. Jacobson at Dana-Farber.
Around this time, I also found an interview with Dr. Jacobson on the podcast, Treating Blood Cancers. I could barely understand a word of it, but when she explained it to me in person, in plain English, I totally got it. She came in with her whole team, which is one of the amazing things about Dana-Farber –you get the full attention of a group of smart professionals.
Initially, I’d thought we were going to Dana-Farber just to confirm my existing treatment plan, but that appointment changed everything. Dr. Jacobson strongly recommended “whole body treatment,” rather than targeted radiation, given my relatively young age. I learned I was eligible for a clinical study testing CAR T-cell therapy in conjunction with Keytruda. Dr. Jacobson’s clarity and certainty made the decision easy, and I was excited to be given access to the study.
People can have different responses to CAR T-cell Therapy. What was the treatment like for you?
I entered Dana-Faber mid December of 2023. Once more, I was in the hospital over the holidays. Even though the timing was rough, my family rallied. By then, all three of our kids were either older teens or young adults and they totally rose to the challenge. They kept the household running, did all the grocery shopping and took good care of themselves while my wife and I were in Boston.
One interesting thing about CAR T-cell therapy is how quick the infusion is. With chemotherapy, I was used to four-day marathon infusions, but the reinfusion of my T-cells took just over an hour. Then I spent two weeks having the worst “flu” of my life. My fevers went up to like 103, 105 and I struggled with cognitive symptoms. Every day they gave me a test – a simple cognitive task like counting backwards from 100 by tens. You can’t leave until you can perform these tasks successfully. Often, I’d look at the clock to help me count backwards by tens. One day, when I was really hoping to be discharged, Kathy was blocking my view of the clock and I was willing her to move. Thinking, “Please, Kathy, I wanna get out of here!”
CAR T is a therapy that really knocks you down, cognitively and physically. But it was so worth it – I had a “complete response” and I made it home by New Year’s Day, 2024.
As someone who is very athletic and enjoys the outdoors, what did you do as you waited to regain your strength? What was that period of recovery like?
After I got home, I spent about two months on the couch. I had to deal with some mild digestive symptoms, but
gradually my strength and energy came back. Even during treatment I was able to get out of bed and walk the floor, so once I was home, as soon as I could be, I was out walking and running. Moving was one of the ways I took back control over my health, and it helped my morale. In November of ‘24, I was able to run the Turkey Trot distance. This past Thanksgiving, I improved my time in the Manchester Road Race by 6 minutes over last year’s time. I know that might not sound like a lot, but to me it's a big deal.
Did the experience of illness and recovery change you in any fundamental ways?
It’s made me grateful for what I already have. My children were really there for Kathy, so that she could be there for me. And, I’ve held onto an awareness of how limited our time is. I also grew my appreciation for the heroism of nurses. My mother was a nurse and while I always appreciated her work, this experience brought it home. I spent the year after she passed away living with nurses and seeing firsthand how valuable their work is.
Patients need advocates at the bedside. The doctors are focused on reading your lab numbers and determining treatment. But the nurses are looking at how the patient actually feels, and tending to their symptoms, they are an important conduit to the doctors. And, they take care of all the little details that make a difference, day by day.
Overall, I feel a great sense of gratitude towards Dana-Farber and Dr. Jacobson and all the professionals there who took the time to help me and my family truly understand my disease, and get through it. We’ve always known Dana-Faber was a special place, but being a patient there proved it. My family is so grateful.
The Adult Stem Cell Transplantation Program at Dana-Farber Brigham Cancer Center is one of the largest and most experienced stem cell transplant programs in the world. We have performed more than 12,400 transplants for the treatment of blood cancers and related disorders since our program began in 1972. We perform rigorous outcomes analysis to support our research and treatment advances. Our center-specific outcomes have been recognized as among the best in the world. dana-farber.org/sct
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.