The Mind After Transplant & CAR T

Transcript:

Welcome

Hello — and welcome to the very first episode of Thrive! — a podcast from BMT InfoNet. I’m Eric, and I’m really glad you’re here.

We created Thrive! for people navigating life before, during, and after a stem cell transplant or CAR T-cell therapy — and for the care partners and care teams who support them. Each week, we bring together trusted information, expert insight, and real-world perspective to help listeners feel more informed, more confident, and better equipped to make decisions about their care.

Now, whether you’re a patient, a survivor, a care partner, or a medical professional, our goal is to share clear, reliable information — and connect clinical insight with the lived experience of patients.

The heart of today’s episode focuses on something many survivors experience but don’t always talk about — changes in memory, focus, and mental clarity after transplant or CAR T-cell therapy. We’ll spend most of our time looking at what’s behind these cognitive challenges — and what can help.

But before we get there, we’re going to take a quick look at a few important updates from the world of stem cell transplant and CAR T-cell therapy.

Let’s get started.

A Few Updates

PTSD SUPPORT APP
For many survivors, the hardest part doesn’t end when treatment does.

In a recent article from ASCO Daily News, researchers shared early results from a study looking at a mobile app designed to help cancer survivors manage symptoms of post-traumatic stress.

The study focused on survivors who continued to experience distress, anxiety, or trauma-related symptoms after completing treatment. Participants used a smartphone app that guided them through brief, structured exercises drawn from

evidence-based mental health therapies — including techniques to help deal with emotional regulation, stress, and coping.

Researchers found that survivors who used the app showed meaningful improvements in PTSD-related symptoms over time, suggesting that accessible, low-cost digital tools may offer real support for people who struggle emotionally after cancer treatment ends.

What’s especially notable is that this kind of support doesn’t require frequent clinic visits or specialized mental health care — which can be difficult to access for many survivors. Instead, it points to a growing role for digital tools that can meet people where they are, offering help between appointments and alongside traditional care.

FASTER TRANSPLANT WITH ALTERNATIVE DONORS
For some people preparing for transplant, the stress doesn’t always come from how they feel physically — it comes from waiting. Waiting for answers. Waiting to find a donor. And wondering how long is too long.

One large study conducted by the Blood and Marrow Transplant Clinical Trials Network offers encouraging news for people who need a stem cell transplant but may have difficulty finding a fully matched donor. The goal of the study was to determine whether transplant centers could avoid lengthy searches for fully matched donors when the search was unlikely to be successful.

The study found that patients who received transplants from alternative donors — including partially matched unrelated donors, half-matched family members, and

umbilical cord blood — had similar survival rates at two years as those who received cells from fully matched donors. Importantly, the time it took to get to transplant — and overall outcomes — were not worse when alternative donors were used.

The key takeaway from this research is that spending months searching for a perfectly matched donor may not be the best option for patients who are unlikely to find one. Moving more quickly to an alternative donor can help people get to transplant sooner, without sacrificing success.

This is especially meaningful for patients from racially and ethnically diverse backgrounds, who are statistically less likely to find a fully matched unrelated donor. The findings support a more flexible, personalized approach to donor selection — one that prioritizes timely access to transplant for more people.

OLDER DONORS SAFER WITH MODERN GVHD PREVENTION
Even when a donor is found, families often worry about whether it’s the right donor — and what tradeoffs might come with that choice.

New findings reported by the American Society for Transplantation and Cellular Therapy suggest that donor options may be broader than once thought for people needing an allogeneic stem cell transplant.

Traditionally, transplant teams have favored younger unrelated donors, because older donor age has been linked to worse outcomes. But a large analysis of more than 10,000 transplants found that this age-related risk was greatly reduced when patients received post-transplant cyclophosphamide — often called PTCy — to help prevent graft-versus-host disease.

In patients who received PTCy, older donor age did not appear to have the same negative impact on survival seen with traditional GVHD prevention methods.
These findings suggest that newer transplant approaches may help counteract some of the biological risks associated with older donors.

For patients, this could mean access to a broader pool of potential donors — and fewer delays while waiting for a younger match — making timely transplantation possible for more people.

A Quick Note
Hey — just a quick thought before we keep going.

If this podcast is helpful for you, there’s a good chance it could be helpful to someone else, too. One of the simplest ways you can support the show — and help others in the transplant and CAR T community find it — is by subscribing or following the podcast, and leaving a quick rating or review. It really does make a difference.

And if you ever have thoughts about what you’re hearing — what’s helpful, what’s not, or topics you’d like us to explore — we’d genuinely love to hear from you. You can email us anytime at thrive@bmtinfonet.org.

And if you’d like more updates, resources, and survivor stories between episodes, you can also sign up for BMT InfoNet’s newsletter or follow us on social media.
You’ll find all of those links in the show notes.

Something That May Help - Caring Connections 
You know, sometimes what helps most isn’t more information — it’s talking with someone who’s already walked this path. Someone who really understands what you’re dealing with, not just medically, but personally. Someone who’s been there, asked the same questions, and came out the other side with a little more clarity than you might feel right now.

I want to share something that may help.

BMT InfoNet offers a program called Caring Connections, which connects patients, survivors, and care partners with trained volunteers who understand the transplant and CAR T journey — because they’ve lived it themselves. Sometimes, talking to someone with a shared experience can make all the difference in the world.

Caring Connections offers one-on-one peer support by phone or email, and it’s free and confidential. Whether you’re preparing for transplant or CAR T-cell therapy, adjusting to life after treatment, or supporting someone you love, having that kind of connection can make a real difference.

If this sounds like something that could be helpful for you or someone you care about, you’ll find more information in the show notes, or under the Resources tab at bmtinfonet.org.

Deep Dive - The Mind After Treatment 

There you are, standing in the grocery store. The produce aisle, actually. You look around and see the fresh vegetables, but you suddenly can't remember what specifically you came for. Was it carrots? Broccoli? Were you getting something to add to a salad? You can picture yourself at home, in the kitchen, making the list in your head. But now... nothing. It's gone. You should remember this. Why can't you remember this?

If you've been through transplant or CAR T, you may know this feeling. And you might be wondering: Is this just me? Am I losing my mind? Will it get better?

Today, we're talking about something that doesn't get discussed enough—the mental fog, the lost words, the moments where your brain just ... won't cooperate. And here's what you need to know: you're not alone in this, and there are things that can help.

OPENING
Welcome to this week's Thrive! Deep Dive. If you've had a stem cell transplant or CAR T-cell therapy, you've already shown incredible strength. But many survivors tell us that one of the hardest things to face isn't physical—it's mental.

Some call it "chemo brain," others describe it as "brain fog." Whatever the name, it can feel unsettling to suddenly lose your train of thought, forget a word that used to come easily, or struggle with multitasking.

If this sounds familiar, you're not alone. This week, we're taking a closer look at these cognitive challenges—why they happen, what to expect, and most importantly, the strategies that can help.

Our guide is Dr. Zev Nakamura, a psychiatrist and clinical researcher at the University of North Carolina's Lineberger Comprehensive Cancer Center. He supervises a psycho-oncology training clinic that helps patients manage memory, focus, and other neuropsychiatric effects of treatment. Dr. Nakamura's research involves evaluating patient-reported cognition outcomes, understanding how other psychosocial and biological variables impact cognition, and testing pharmacological and behavioral interventions to prevent or treat the cognitive consequences of cancer and cancer care.

At BMT InfoNet’s 2025 symposium, Dr. Nakamura explored these cognitive challenges in depth — what causes them, how they change over time, and the treatment options that can help. In this Deep Dive, we’ll walk through those insights together.

SEGMENT 1: WHAT ARE COGNITIVE CHANGES?

Let's start by defining what we mean when we talk about cognitive changes.

Patients often describe trouble finding the right word, difficulty staying focused, or frustration with tasks that once felt simple.

Dr. Nakamura explains it this way:

Dr. Nakamura 

“So, when I refer to cognitive problems, I'm really talking about a wide collection of symptoms. Some things that I hear patients describe to me, is that they have difficulty finding the right word they're looking for, difficulty when they need to multitask, or difficulty completing complex tasks. Both in terms of what people describe and what we see on cognitive testing, include decline in concentration and focus, slower thought processing speeds and difficulty planning or strategizing doing something in their daily life.”

Dr. Nakamura also finds that memory is frequently affected by cancer treatment. Patients report that their long-term memory may stay fine, but their short-term memory is substantially impacted.

One type of memory that's especially affected is called working memory. Think of it this way: you're at home and realize you need groceries. You have a mental list—milk, eggs, bread. But by the time you get to the store, the list is gone. You remember you needed groceries, but can't recall what they were. That's working memory—your ability to hold information just long enough to use it. Dr. Nakamura notes this appears to be the aspect of cognition most impacted by cancer and cancer treatment.

Even though these changes might appear minor in clinical testing, the effects can be profound in everyday life. Managing medications, keeping up with bills, or simply feeling confident at work can all become harder.

Dr. Nakamura 

"In general, for most people the cognitive changes—or cognitive decline
—that occurs due to cancer treatment are usually subtle or small, but the effects can feel large.”

SEGMENT 2: WHY DOES THIS HAPPEN?

So why does this happen? The answer is layered.

Chemotherapy and radiation certainly play a role. Medications like steroids and immunosuppressants can also contribute. But there's more to the story.

Dr. Nakamura highlights inflammation as one key driver. And to help us understand what's actually happening in the brain, he shares a remarkable study involving identical twins.

One twin was healthy. The other had cancer and was undergoing chemotherapy. Both were asked to complete mental tasks while having their brains scanned. The healthy twin's brain responded as expected: calm during simple tasks, gradually more active as the difficulty increased.

But her sister's brain was different. Even during the simplest task, her brain was already working at full speed—like an engine revving too high even while idling.

As the tasks grew harder, her brain had to push harder still, straining far more than her sister's just to keep up.
The surprising part? On paper, their test scores weren't very different. But the sister with cancer described feeling like she was struggling constantly—and her scans showed exactly why.
This example explains why so many survivors say, "My results look normal, but I feel like I'm pushing through fog every single day.”

SEGMENT 3: HOW COMMON ARE THESE PROBLEMS?

Now that we've looked at why these cognitive changes may happen, let's talk about how often they occur.

Research shows that about a third of patients already have some degree of cognitive difficulty before treatment even begins. And once treatment starts—whether it's chemotherapy, transplant, or CAR T-cell therapy—the number of affected patients increases.

Dr. Nakamura 

"Not every person is going to experience the same thing when they go through cancer treatment, but on average, we see that people have a cognitive decline following some sort of aggressive cancer treatment, and then a rebounding of their function with time.”

In one of Dr. Nakamura's own studies, over half of patients showed mild cognitive impairment before transplant. But here's the encouraging part: six months later, that number dropped from 51 percent to 36 percent. Many patients regained their baseline abilities, and some even performed better than before treatment.

Of course, not everyone's journey looks the same. For up to a third of survivors, challenges may persist for years after transplant or CAR T-cell therapy.

Dr. Nakamura

"The prevailing theory at this time is that people with more aggressive cancers have higher levels of inflammation. Those increased levels of inflammation are at least one important factor driving the cognitive problems.”

The encouraging news is that, for many, these cognitive changes improve over time.

SEGMENT 4: WHO’S AT GREATER RISK?

So who's most likely to face longer-term difficulties?

Dr. Nakamura explains that age is the most consistent predictor—older survivors face higher risks. But it's not the only factor.

Dr. Nakamura 

"Age is definitely the most consistent predictor – where older age is a risk factor for worse cognitive outcomes after transplant. But there are a variety of other important factors as well. People who do not have a spouse or someone living with them in the home — they don’t seem to do as well. People who have obesity , or those taking multiple medications that affect the brain are also at greater risk.”

Chronic graft-versus-host disease is another risk factor — a side effect experienced by many patients who have a transplant using donor cells, also known as an allogeneic transplant. And those with a history of stroke, delirium, or substance abuse may be more vulnerable as well.

Here's something interesting: younger patients often report worse cognitive problems even though they actually test better than older patients. Dr. Nakamura explains this happens because younger people are typically doing more cognitively demanding tasks in their daily lives — so they're more likely to notice when things aren't working as smoothly as before. If you're younger and struggling, know that what you're experiencing is real, even if test results don't always reflect it.

SEGMENT 5: WHAT CAN HELP?

So far we've explored what cognitive changes are, why they happen, and who's most at risk. Now let's turn to the most important part—what can help.

The good news is that there are many strategies available, ranging from lifestyle adjustments to medical treatments. Dr. Nakamura organizes them into four broad categories.

Dr. Nakamura

“I want to pivot to talking about treatments. We have cognitive rehabilitation, mind-body interventions, physical activity or exercise, and medications."

Cognitive rehabilitation is often the first step. One method is strategy training, where a therapist works with patients to identify problem areas and build practical tools—like planners, sticky notes, or digital reminders—to make daily life easier.  The focus isn't on curing the problem but on finding ways to work around it, so independence and confidence are preserved.

The second method is cognitive training—sometimes called brain games. These involve short computer-based exercises, usually about 30 minutes, designed to stretch memory, attention, and problem-solving skills. Programs like HappyNeuron, Lumosity, and BrainHQ have been studied in cancer survivors with promising results.

Exercise is another powerful tool. Even moderate physical activity can support blood flow, reduce fatigue, and improve focus. A daily walk, light yoga, or gentle stretching can be surprisingly effective.

Mind-body approaches are also gaining attention. Mindfulness, for example, has shown benefits across multiple studies. The beauty of mindfulness is accessibility: you might join a structured program at a university, use a guided meditation app, or simply practice short breathing exercises at home. Acupuncture is another approach showing encouraging results.

Medications can also play a role. Two groups in particular are being studied: stimulants used for ADHD, and Alzheimer's medications. While they aren't a perfect solution, some patients report meaningful improvements in daily function.

And then there are the simple but powerful everyday habits. Keeping a regular routine. Tackling mentally demanding tasks at the time of day when you feel sharpest. Using lists, reminders, and calendars to reduce the pressure on your memory.

Workplace accommodations can also be a lifeline. Adjustments in schedule or workload can ease the return to work and set survivors up for success. As Dr. Nakamura stresses, these are not weaknesses—they are smart, practical strategies.

For those who want to learn more, Dr. Nakamura recommends the book Improving Cognitive Function after Cancer by Shelli Kesler, PhD. It's written for patients and provides practical exercises that reinforce many of these approaches.

And his message is clear:

Dr. Nakamura 

"There are a lot of factors that both worsen cognition, and if they’re addressed, can substantially improve cognition."

OUTRO

So, here’s what I hope you take with you.

Cognitive challenges after transplant or CAR T-cell therapy are real — and they’re far more common than many people realize. For many survivors, these changes improve with time. And for those who continue to struggle, there are strategies, supports, and treatments that can help.

Dr. Nakamura 

“Cognitive difficulties are common before, during, and after stem cell transplant and CAR T. But there are many medication, non-medication, and lifestyle strategies that can be helpful.”

This Deep Dive is just the beginning. To explore more, you can watch Dr. Nakamura's full presentation or read the transcript, followed by 19 minutes of Q & A—both are linked in the notes for this episode.

And remember, with time, support, and the right strategies, many survivors find their mental clarity and confidence return. Be patient with yourself—these changes don’t mean you’re failing; they mean your body and brain are still healing.

One Last Thought 
As we wrap up today, I just want to say this.

If changes in memory, focus, or mental clarity are something you’ve noticed after transplant or CAR T-cell therapy, you’re not imagining it — and you’re not alone in experiencing it. For many people, these challenges improve with time. And when they don’t, there are real strategies, supports, and people who can help.

We hope today’s conversation offered a little clarity, maybe a little reassurance, and even a sense of relief — knowing that what you’re experiencing is understood, and that help is available.

We’d love for you to join us next week, when our Deep Dive will focus on managing infections after transplant or CAR T-cell therapy — what to watch for, what’s common, and how to protect yourself as you move forward.

And if you ever want to share feedback, ask a question, or suggest a topic you’d like us to explore, you can always reach us at thrive@bmtinfonet.org. We really do read every message.

Until next time —

Keep asking questions. 
Keep seeking answers.
And remember that you. Are not. Alone.