Kris's Story: I Was So Wrong About My Last Chapter

I am writing this on June 4, 2026, two years to the day since I received my Tecartus CAR-T cells.

Four years ago, I thought I was starting my last chapter. I had just been diagnosed with mantle cell lymphoma. Not the slower-moving type some people have, but aggressive, high-risk disease. The laboratory findings included obscure test results: “TP53 mutation, complex karyotype, and pleomorphic features.” As a Physician Assistant, I understood enough to know what those words meant. I also understood enough to be terrified.

Living to die

I left my job. I tried to wrap my head around having maybe 3 to 5 years left. And without even realizing it, I started living to die.

I took trips thinking they would probably be my last ones. I pulled away from people I cared about because imagining leaving them was too hard. I hesitated to buy a new boat because I didn’t think I would be here long enough to enjoy it. I was scared to sign a car lease because I thought I might die before the lease was up.

The road to CAR-T

At first, I was relieved that I did not need traditional chemotherapy right away. I had immunotherapy/targeted treatment, along with one round of extremely toxic high-dose chemo, Hyper-CVAD, and hoped I might get a long remission. For a while, I did get a break. Then the cancer came back.

What I did not understand in the beginning was how much treatment it might take just to get me to CAR-T. After I relapsed, I needed more traditional chemotherapy than I ever expected. I lost my hair. I was sick. I was weak. I had complications. There were months when my life became hospitals, lab results, scans, treatment decisions, and trying to stay strong enough for the next step.

Two years later

On June 4, 2024, I received Tecartus CAR-T cell therapy. CAR-T was not easy, and I do not want to pretend it was. But two years later, I am in a deep remission and living with a quality of life I honestly did not think I would have again.

I was so wrong about my last chapter. Today I am working out and walking daily, traveling, spending time with my family and friends, watching my grandchildren grow, and making plans again. And I bought the boat.

What brought me to this work

I know how fortunate I was to be able to travel for expert opinions and specialized treatment. I was able to see a mantle cell lymphoma specialist, receive some of my treatment closer to home, and eventually temporarily move halfway across the country for CAR-T. I do not take any of that for granted. But I also know that not every patient can do that. And honestly, they should not have to feel like traveling across the country is the only way to understand their options or feel confident in their treatment plan. Many patients are treated close to home by local oncologists who care deeply for them but may not see mantle cell lymphoma every day. That experience is part of what brought me to this work. One of my hopes for MCLA is that we can help patients and their local teams have access to clear, current, expert-informed MCL information wherever they are being treated.

I know what it feels like to be newly diagnosed and overwhelmed. I know what it feels like to read survival statistics that are outdated, or may not apply to your specific type of MCL. I know what it feels like to wonder whether you are seeing the right doctor, asking the right questions, or missing something important. I also know how frightening relapse is, especially when you are not sure how many treatment options you have left.

That is why clear, reliable information from people who understand mantle cell lymphoma matters so much. Patients and caregivers need help understanding treatment options, clinical trials, second opinions, and the importance of MCL research.

My story is not just that I survived. It is that I was given more time than I expected, and now I want to help other patients and caregivers feel a little less lost than I did.

I thought I was starting my last chapter. Instead, I am still here with many new chapters to come, helping build something I wish had existed when I was diagnosed.