Let’s chat about CAR T—One-On-One

After lengthy tenures in the newspaper and construction businesses, married father of three, Darrin, became a teacher at 50 and was diagnosed with blood cancer shortly after. Unable to finish his first year of teaching, his treatment journey included a bone marrow transplant, chemotherapy, and ultimately CAR T-cell therapy.

When my blood cancer came back for the second time, I expected the search to begin again for a bone marrow donor. However, my wife and I discussed additional treatment options with my doctor, and he told us about CAR T-cell therapy (CAR T). As a math teacher, I am always interested in reading as much as I can about rates of remission and successful results. What I discovered about CAR T seemed very hopeful and compelling. My wife and I were given pamphlets of information to look over before making the decision to follow through. She’s a chemistry teacher so she researched most of the information for me. In the end, the only real concern I had was whether I would experience side effects. After fully discussing the option with my doctor, we decided to move forward with CAR T.

My new and improved T cells were infused into my body, and everything went according to plan. My doctor told me side effects were expected by day three or four, and that I would probably be in the hospital for about 10 days. I developed a fever around day six, so 10 days was sounding optimistic. While the fever didn’t last long, the neurological side effects that came with it certainly did. I first became aware that I was having problems when the “count backwards from 100” question came along. I got to 50 and was stuck. This was so distressing for me. I had never struggled this hard with numbers, and now I couldn’t count backwards by 10s?! The next several days were a repeat of this. I could answer some questions, but I struggled with others. When I finally returned home, I left with a new treatment that made me feel tired and bloated. Numbers started to come back to me, and my compromised cognition was no longer something I struggled with.

My goal every day during this experience was to just make it to the next day. I’m proud to say that two months after CAR T, I went back to virtual teaching, and my students were very excited to see me back!

When Ed’s wife, Ann, was diagnosed with blood cancer, he put everything aside to help care for Ann. Ed remained present and advocated for Ann as she went through CAR T-cell therapy, without forgetting to take care of himself.

I remember sitting in the hospital with Ann one day, and I watched as the warmth of the sunshine came through the window. It was so beautiful. I knew I needed to be strong for my wife, so I refused to show too much emotion even when it was hard not to. It was important for me to be present and advocate for Ann without forgetting to take care of myself as well.

While Ann was going through CAR T-cell therapy (CAR T), I still worked and recognized when I needed to take a break for myself. I love exercise, so I would go to the gym every morning to run, which helped me get any frustration I was feeling out of my body. Work provided me with an opportunity to focus, and that helped me stay grounded so I could be present for my wife when I needed to be. This was my experience, but I realize every experience as a caregiver is different. I think it is important to listen to your intuition and do the things that will help you feel as stable as you can during a very challenging time.

This experience has led me to reflect a lot about family, love, and support. Growing up, I was the oldest of three siblings. Unfortunately, there was abuse in our household, some physical, but primarily psychological. To cope and protect myself, I became accustomed to disconnecting myself from my emotions. As an adult, I have done a lot of therapy to reconnect with my emotions so I can be as present as possible for those I love. I have worked very hard to ensure that I can connect and be there for my family and that was extremely important throughout Ann’s treatment journey.

Today, I am thankful to share a close bond with my son, my daughter, and my wife. We share the good, the bad, and the ugly, and we work collectively to support Ann however we can. When we knew something wasn’t right with her, we put everything else aside and helped her with what she needed at that moment. When I talk to other caregivers, I remind them that it’s important to be present and supportive of your loved one, but to do that, you need to attend to your own needs as well. That might mean taking a little time to go to the gym or doing an activity that grounds you. It will help you bring your best self to your role as a caregiver.

A close-knit hometown community has been a rock for Judy throughout her journey with blood cancer. After her blood cancer returned and she received multiple treatments, keeping the cancer at bay briefly, CAR T-cell therapy was introduced to her as a treatment option.

After my fourth time being diagnosed with blood cancer, my oncologist recommended a treatment called CAR T-cell therapy (CAR T). He explained it was a treatment that would extract T cells from my body and re-engineer them to target cancer cells.

Of course, I had quite a few questions. Prior to this, I’d undergone a stem cell transplant, so I was familiar with the idea of using my body’s own defenses to fight against cancer. I did some research on my own and I felt good about deciding to try this treatment after my oncologist explained the process in more detail.

It seemed like a lot of information at first, but I had been through so many different cancer treatments before that I felt like this was something I could handle. Once you’ve been diagnosed with cancer four times, you feel like you can take on anything.

My healthcare team did a wonderful job preparing me for any side effects, especially because I was worried about the potential neurological side effects. I trusted that my healthcare team would be there to manage any side effects as best as possible. I’ll admit, the day of my infusion, I was nervous. It’s different hearing and reading about something than actually going through with it—but after the infusion was complete, I felt a sense of relief. I knew I had taken the first step, and now I just needed to recover and wait for results.

I was in the hospital for about two weeks and each day the doctors and nurses kept a close eye on me. They asked me questions and did some different neurological exams to monitor my cognitive functioning. My healthcare team was so patient and considerate throughout the process, and I couldn’t be more grateful to them. In my experience, by the time I had left the hospital, there had only been four days that felt foggy, or that I couldn’t remember from my recovery.

Waiting for results is the worst part. Two weeks after I was released from the hospital, I had a PET scan that showed improvement in my condition. I continued to undergo PET scans every three months, and so far, my oncologist and I are pleased that my cancer is not detectable in my scans. Please remember that this is just my experience and others may be different.

As someone who has been diagnosed with cancer four times, I’m familiar with the shock, fear, and anxiety that comes with a cancer diagnosis. With CAR T, I’ve become familiar with something new—the future.

Melissa has been a caregiver for as long as she can remember, ensuring that her loved ones always have what they need. When her husband, Marc, was diagnosed with blood cancer, her role as a caregiver became even more important. Melissa had to learn how to manage the different emotions that came with Marc’s cancer treatment, but they got through it together.

I’ve been a caregiver for as long as I can remember. I’ve always loved looking after the ones closest to me and making sure they have what they need. But when my husband, Marc, was diagnosed with blood cancer, my role as a caregiver became even more important.

I tried to be strong and positive for both of us, but I can admit that sometimes I felt overwhelmed. My husband tried various treatments for his cancer, but nothing seemed to work. That’s when his oncologist mentioned treatment with CAR T-cell therapy (CAR T).

After discussing CAR T with our doctor, we made the decision to start treatment. It was hard watching Marc go through another round of treatment for cancer, but I just held on to the hope that CAR T would finally make the difference we needed. Throughout the process, I had to learn how to manage the different emotions that come with caring for a loved one going through a health crisis. There was a lot of crying and praying. But we got through it and came out the other side as a team.

After Marc went through treatment with CAR T, he stayed near the CAR T medical center for a month for monitoring and I stayed with him. Throughout this process, I learned what some of the most important aspects of caregiving are: loving, listening, patience, and selflessness. I was there to make sure Marc was comfortable and that he had a familiar face to turn to. Being a caregiver to a cancer patient going through treatment means doing the big, logistical acts of care, like talking to doctors and organizing medical documents. It also means more subtle and emotional things, like trying to understand their fears. I learned that we both had the same fears, but we were coming at them from different angles because he was living through this experience, and I was watching it.

Immediately after treatment, we continued to hope for the best and we were ecstatic when our doctor told us that the scans looked good. We’ve adjusted back to life after CAR T, but I’ll never stop being a caregiver to the ones I love around me.

When Susan’s husband, Darrin, was diagnosed with blood cancer, their entire world was turned upside down. Their daughter had recently been diagnosed with a chronic condition, so Susan balanced caring for the two at the same time. She learned that being a caregiver doesn’t mean shouldering everything alone; she just needed to be present for the people she loves.

When I think back on my husband’s journey with cancer, I think about the small moments that brought us together.

When my husband, Darrin, was diagnosed with blood cancer in 2018, our entire world was flipped upside down. At the time, I was already taking care of our daughter who had been diagnosed with Crohn’s disease. I knew what it was like to spend hours driving to specialty doctors, keeping track of medical records and medications, and just being there when the one you love is suffering. In short, I already had experience being a caregiver.

After my husband’s diagnosis, my caregiving abilities had to be stretched between two people. This felt overwhelming and I can admit now that I was scared. I tried to work hard enough and be strong enough for everyone around me.

When the doctor told us the news, my husband started to cry. Even though I was also devastated, I thought to myself, “I have to be strong for him, I can’t let him see me break down.” When my husband realized what I was doing, he turned to me and said, “If we get bad news, we cry together.” It was then that I realized being a caregiver doesn’t mean shouldering everything alone. It just means being there for and with the ones you love.

After trying different treatment options without success, Darrin’s oncologist suggested we try treatment with CAR T-cell therapy (CAR T). Darrin would have to stay at the CAR T medical center for at least a week after receiving the infusion, then remain nearby for a month for monitoring. Even though it was difficult to leave my daughter and take time away from work, there was never a question of whether I would go to the hospital with my husband. After treatment, I stayed by my husband’s side and did everything I could to be present for him. I knew it made him feel better to see me there.

Since Darrin’s treatment with CAR T, my caregiving duties have decreased as we readjust back to life after cancer. There’s one thing that will never change—I’ll always be present for those I love.