Why Not Me? Living Outside the CAR-T Majority

CAR-T cell therapy brings results that once seemed unimaginable: long, treatment‑free remissions after a single infusion. For many people living with relapsed multiple myeloma, this personalized treatment — using a patient’s own genetically modified T cells — is redefining what remission could mean. For me, CAR-T represented the hope of more time: time not just to live, but to live with some measure of normalcy.

A year ago, on Dec. 16, 2024, I was waiting for the team to arrive with my engineered T cells that were designed to hunt down rogue cancer cells. Clinical trial data showed that the therapy I was about to receive had given more than 33% of heavily pretreated myeloma patients more than five years in remission. For standard-risk patients treated earlier in their disease, an updated trial showed that about 80 percent remained progression-free at two and a half years and counting. This was the data I clung to as permission to hope.

Those results are why I advocated strongly with my doctor and pushed relentlessly with my insurance company to pivot from a stem cell transplant to CAR-T, following an early relapse after induction treatment. At the time, CAR-T had only recently been approved as a second-line option for some patients. Although my insurance finally approved coverage to be done locally, it was only at the out-of-network level. We believed the financial risk was worth taking. Waiting felt riskier.

That morning, in my hospital room waiting for the infusion team to arrive, my insurance company called. My treatment had finally been approved as in-network, “saving” us more than $30,000 out of pocket. Although a huge relief, no amount could truly measure against the value of more time.

Soon after, the healthcare team gathered with clipboards, and the wheeled cart carrying my frozen T cells in a pony-keg-looking container, steam rising from the top, rolled in. I was ready. Nine days later, on Christmas, I went home. Recovery began. Hope took hold.

Today, a year later, I sit at my computer, feeling the erosion of the time I had hoped CAR-T would give me. Even as I dealt with ongoing issues this past year, I hoped my myeloma would not find a workaround so quickly. At minimum, I hoped it would stay in hibernation over the winter. Over the past two months, however, my lab results have shown that my myeloma is waking up again.

I hold this reality while reading research findings presented at the recent American Society of Hematology (ASH) conference, filled with remarkable outcomes from the same CAR-T therapy I received a year ago. Once again, I find myself asking the question I know so many patients quietly carry: Why not me?

I’ve been here before. As a patient with myeloma who relapsed just two months after quadruplet induction therapy, I learned early what it feels like to fall outside the curve. While many patients enjoy several years of remission, I relapsed in two months. Now, facing disease progression just 10 months after CAR-T, I am confronting this reality again: my myeloma is not responding the way it has for many others.

Being among the smaller percentage of CAR-T patients without a durable remission carries a particular kind of grief. I had been so hopeful. Reconciling this reality is hard, especially while reading that CAR-T is reshaping what remission can look like for many patients with myeloma. And yet, even amid advances in myeloma treatment, this is my reality. I know the decision to pursue CAR-T was the right one for me. Still, there is a strange dissonance in holding both truths at once: extraordinary scientific progress and the heavy disappointment of finding myself outside the majority, with no clear explanation.

I am sharing this not because I have lost hope, but because this is my current reality. Living with an incurable cancer that resists durable remission means holding hope and grief at the same time — existing between promising data and lived experience. Cancer stories often focus on success, remission, and milestones. Those stories matter. But so do the ones shaped by uncertainty, where the science shows promise yet outcomes remain unpredictable. Cancer doesn’t always follow neat timelines or respect statistics, and sometimes the most honest thing is simply naming the disappointment.

So, I continue to ask the question, why not me? Why hasn’t my disease responded the way the data suggested it might? What combination of science, timing and persistence will it take for me to join those percentages? I ask because I am still here, witnessing remarkable advances, navigating uncertainty, and holding on to hope while living outside the majority of patients.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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