The CAR T Option

Transcript:

Welcome

Hello, and welcome back to Thrive! — a BMT InfoNet podcast about navigating life before, during, and after stem cell transplant and CAR T-cell therapy. I’m Eric.

In today’s episode, we’re diving deep into CAR T-cell therapy — focusing on the kinds of questions that tend to surface when CAR T is on the table. Not just how it works, but what it actually looks like in practice, from preparation and side effects to caregiving, recovery, and daily life afterward.

This Deep Dive draws from BMT InfoNet’s webinar Ask the CAR T Experts, where clinicians and a psychosocial specialist responded directly to questions submitted by patients and care partners — questions and answers we’re going to unpack and explore together today.

But before we get there, we’re going to take a quick look at a couple of recent headlines — including new guidance on supplements, and a moment of reflection on the legacy of one of the pioneers who helped shape modern stem cell transplantation.

Let’s get started.
 

A Few Updates

SUPPLEMENTS AND TRANSPLANT SAFETY
Many people turn to vitamins, herbs, and supplements hoping to support their health — especially after cancer treatment. But what feels natural or harmless isn’t always safe, particularly for people who’ve undergone stem cell transplant or CAR T-cell therapy.

A recent article from The New York Times takes a closer look at what doctors want patients to know about supplements, and why caution is especially important for people with complex medical histories. The article highlights a key concern: unlike prescription medications, supplements are not regulated or tested in the same way, which means labels may be incomplete, inaccurate, or misleading.

For transplant and CAR T recipients, this can be risky. Supplements can interact with medications, interfere with how drugs are absorbed or processed by the liver, and in some cases increase the risk of serious side effects. Certain products may also affect immune function or complicate conditions like graft-versus-host disease.

Physicians interviewed for the article emphasize that supplements should never replace medically proven treatments — and that patients should always discuss any vitamins, herbs, or over-the-counter products with their care team before starting them. What’s safe for one person may be harmful for another, depending on treatment history, medications, and organ function.

And if you’d like to explore this topic further, BMT InfoNet has a 2023 symposium presentation called Herbs and Supplements: Are They Safe for Transplant Recipients? led by a transplant pharmacist, with practical guidance and audience questions. You can find it under the Video tab at BMTInfoNet.org. And of course, the link is in the show notes.

HONORING A PIONEER IN HEMATOPOIETIC STEM CELL TRANSPLANTATION
Recovery and survivorship in blood cancer care don't exist in a vacuum. They're built on decades of work by physicians and scientists who kept pushing forward — often when the odds were uncertain and the path unclear.

In our second story today, we're highlighting a recent feature from ASH News Daily honoring Dr. Rainer Storb, one of the foundational figures in hematopoietic stem cell transplantation. Dr. Storb recently received the Wallace H. Coulter Award for Lifetime Achievement in Hematology, recognizing more than 60 years of contributions that helped shape modern transplant care.

Early in his career, Dr. Storb joined the lab of Nobel Laureate Dr. E. Donnall Thomas at the University of Washington, where together they developed stem cell transplantation as a treatment for leukemia, aplastic anemia, and other blood disorders. One of his most impactful innovations was the development of non-myeloablative, or "mini-transplant," approaches — less intensive conditioning regimens that made transplantation possible for older adults and patients who might not tolerate traditional high-dose therapy.

These advances dramatically expanded access to transplant and helped shift care into outpatient and ambulatory settings, reducing toxicity while preserving effectiveness. His work also helped deepen understanding of graft-versus-leukemia effects, a concept that continues to influence today's immunotherapies, including CAR T-cell therapy.

Dr. Storb credits his dual role as both physician and scientist as key to his success. He emphasizes that splitting time between lab work and clinical service allowed him to see what actually works for patients and then figure out how to overcome barriers — rather than research working in isolation.

What stories like this remind us is that today's transplant and cellular therapy options didn't appear overnight. They exist because of years, and often decades, of careful research, collaboration, and a willingness to follow the science even when answers weren't immediate.

Just a quick mention: we know that some articles like this may live behind a paywall. If you’re unable to read the full piece, we hope that these summary updates still give you the key takeaways when access isn’t available.

A Quick Note
As you’re likely aware, YouTube has become an incredible source of information and education on just about any topic you can imagine. BMT InfoNet’s YouTube channel is a curated collection of many of the same trusted resources you may already know — including full symposium presentations and webinars, expert talks, survivor and care partner stories, and of course, the Thrive! podcast — all thoughtfully organized into easy-to-navigate playlists. You’ll find topics like CAR T-cell therapy, graft-versus-host disease, nutrition, fatigue management and exercise, peripheral neuropathy, sleep challenges, and more. Subscribing to the channel, and turning on notifications, can make it easier to come back to these resources when questions arise, or when you’re ready to explore something more deeply on your own time. You’ll find our YouTube link in the show notes.

And as always, if this podcast — if Thrive! — connects with you on some level, you can really help this show reach more people who might need it by following or subscribing on your favorite podcast platform or on YouTube, and sharing an episode with someone who could benefit. And if you ever want to offer a thought — what you’re enjoying, topics you’d like to hear more about, or any ideas you might have — we’d love to hear from you. You can email us anytime at thrive@bmtinfonet.org.

Something That May Help
CAR T-cell therapy can feel isolating — even when you're surrounded by people who care. The side effects are unpredictable. The waiting is hard. And sometimes the hardest part is that no one around you has been through it.

BMT InfoNet runs a CAR T Support Group for patients who are in the middle of this experience. It's not a presentation or a formal Q&A. It's a space where people who've actually been through it talk openly about what works, what doesn’t, and what they wish they'd known earlier.

You'll hear from people navigating side effects at home, figuring out when it's safe to return to work, or just trying to make sense of how different they feel weeks or months after treatment. Some people share a lot. Others mostly listen. Both are valuable.

You don't need to have questions prepared or know what you're looking for. You just need to be open to hearing from people who get it.

You can find details and upcoming dates at BMTInfoNet.org. We've also included a direct link in the show notes.
 

Deep Dive - Ask the CAR T Experts

Alex sat across from her oncologist, nodding at words like "leukapheresis" and "cytokine release syndrome" — but what she was really thinking about was her dog.

Who would walk him if she couldn't leave the house for weeks? Would she even recognize her own confusion if it happened? Would she need to move near the hospital? What about her grandkids who were always bringing home colds from preschool? And who was going to take care of her when she couldn't drive—or think clearly—for a while?

"Life-changing potential," he said… and then handed her a packet that felt thicker than a phone book.

Alex didn't want hype. She wanted details. Today, that's what we're going to unpack.

HOST INTRODUCTION

Welcome to this week’s Thrive! Deep Dive.

In today’s Deep Dive, we’re focusing on a topic that raises a lot of questions for patients and families considering CAR T-cell therapy. Not just about how the treatment works, but what it really looks like in practice—from preparation and side effects to caregiving, recovery, and daily life afterward.

This episode draws from BMT InfoNet’s webinar, “Ask the CAR T-cell Experts,” which brings together clinical and psychosocial perspectives to address the questions patients and caregivers most often ask as they think about whether CAR T-cell therapy is right for them.

To help guide this conversation, we’re joined by a panel of experts who bring different perspectives on CAR T-cell therapy and survivorship:

• Dr. Jay Spiegel - hematologist at the University of Miami Sylvester Comprehensive Cancer Center, with a clinical focus on CAR T for lymphoma.
• Dr. Diana Cirstea - hematologist-oncologist at Mass General Brigham Cancer Institute, specializing in CAR T therapy for multiple myeloma.
• Margaret Franzetti - licensed clinical social worker who supports CAR T survivors and facilitates BMT InfoNet’s online groups.

Together, their perspectives help paint a clearer picture of what CAR T-cell therapy can look like for people considering it.

Let’s start at the beginning of the CAR T journey.

SEGMENT 1: WHAT ARE THE STEPS INVOLVED IN UNDERGOING CAR T-CELL THERAPY?
If your doctor says, “I think it’s time to talk about CAR T-cell therapy,” what happens next?
First, there’s the referral: either to your own center’s CAR T team or to a specialized center. Then, right away, a very practical gatekeeper appears: insurance approval which could take two to four weeks.

Once insurance is approved, you move to the first big step: collecting your T-cells with a procedure called leukapheresis. Dr. Spiegel explains,

Dr. Spiegel

“CAR T depends on taking your own T-cells from your body with a procedure called leukapheresis. It’s a machine that looks like a dialysis machine. A 4-to-6 hour outpatient procedure that the patient requires either a placement of two peripheral IVs or a central line. (EDIT) 4-to-6 hours the cells are collected, and sent to a company that will then make the T-cells into CAR T-cells.”

During those three to five weeks while your cells are being turned into CAR T-cells, your team may give “bridging” chemo or targeted therapy to keep the disease under control.

When the cells are ready, you’ll come back for a short course of chemotherapy—lymphodepleting chemo—to make room for the CAR T-cells.

Then comes infusion day itself—often surprisingly anticlimactic: an IV bag, a short infusion, and a lot of monitoring.

From the moment your care team decides you need CAR T to the actual infusion, you’re usually looking at about two months.

SEGMENT 2: WHAT ARE THE MOST COMMON SIDE EFFECTS OF CAR T-CELL THERAPY
Once the cells go in, side effects, or “toxicities,”become the big concern. The most common early ones are cytokine release syndrome—known as CRS—and neurotoxicity.

CRS can show up as fever, sometimes low blood pressure, and in rare severe cases, lung problems that may require a breathing machine.

Another major toxicity is neurotoxicity. Depending on the grade of neurotoxicity, it can manifest as confusion, difficulty talking, concentrating, staying awake, or seizures.

The incidence of CRS and neurotoxicity depends on the disease you’re treating as well as the type of CAR T product selected.

Whether these side effects are monitored inpatient or out-patient depends on the center and on you. Some people start outpatient but are admitted if they develop CRS or neurotoxicity. You and your care team will plan around where you live, your caregiver situation, and your center’s policies.

SEGMENT 3: HOW LONG DO CAR T-CELLS SURVIVE IN THE BODY?

A big question for myeloma patients is: how long do CAR T-cells stick around, and does longer always mean better?
Dr. Diana Cirstea weighs in on this:

Dr. Cirstea

“In multiple myeloma, the presence of CAR T-cells in the body varies by product and by patient. Generally, it ranges between a few months and several years.”

Dr. Cirstea goes on to say that there are two CAR T products that are FDA approved for multiple myeloma: cilta-cel (CARVYKTI) and ide-cel (ABECMA). Cilta-cel CAR T-cells can be detected up to two to three years in some patients. Ide-cel CAR T-cells are usually detected for a shorter period of time, typically around three to 12 months.

She emphasizes something reassuring: persistence isn’t everything.

Dr. Cirstea

…EDIT “We have patients in whom CAR T are not detectable after a few months, and yet they are in deep and sustained response. So one of the main factors in multiple myeloma in terms of CAR T efficacy is actually the adaptive response that is achieved early on with CAR T treatment, rather than persistence.”

SEGMENT 4: HOW CAN I AVOID INFECTIONS?

Because CAR T kills B-cells along with the cancer, infections are a real concern. Patients often ask whether it’s safe—and worthwhile—to get vaccines like COVID, flu, and RSV after treatment.

Dr. Cirstea

“It is generally safe. And it’s actually strongly recommended. Acknowledging that the immune response to the vaccine may be suboptimal after CAR T. So there was a study that reported that 31% of infections after BCMA CAR T were preventable. And that basically underscores the importance of trying.”

Along with vaccines, many patients need antiviral and antibiotic preventative medicines, and sometimes IVIG—intravenous immunoglobulin—to supplement antibodies.

And of course, the basic—but powerful—measures still matter: frequent hand washing, avoiding people who are sick, and taking extra precautions when blood counts are low.
 

SEGMENT 5: HOW LONG DO I NEED A CAREGIVER?

CAR T-cell Therapy is not a solo project. Most centers require you to have a 24/7 caregiver for at least part of your recovery. Speak with your healthcare team and understand that the recovery time can vary.

Social worker Margaret Franzetti, who currently facilitates BMT InfoNet's CAR T-cell therapy online support groups, adds…

Margaret Franzetti

“When it comes to what a caregiver actually does, they are really your safety partner in the process. Their job is to not necessarily provide you with medical care, but to be your eyes and ears.”

“Safety partner” is the key phrase here—someone to watch for confusion, trouble speaking, fevers, or other changes and call your team right away. They also help with rides, hydration reminders, and keeping you engaged in things you enjoy.

But what if you don’t have a built-in caregiver?

Margaret Franzetti

“You’re definitely not alone. Many patients face this. You know, not everybody has a spouse or a partner or a family member that’s nearby. (EDIT) I’ve seen many patients get creative and, in my role as the oncology social worker on the CAR T team and for most CAR T-cell therapy centers you will have a social worker available to you.”

At most CAR T centers, you will have a social worker, like Ms Franzetti, or a nurse navigator available to help you put the pieces together for your home care.

Being creative could mean leaning on a family member for a few hours each week, leaning on a neighbor for a few more hours, or hiring a home health care aide for a specified period of time.

Your team can also help you look into financial resources: general patient aid, family medical leave programs in some states, and institutional or pharmaceutical assistance.

For emotional support, there are structured peer programs and support groups, including BMT InfoNet.

SEGMENT 6: LINGERING SYMPTOMS AFTER CAR T

Some patients feel surprised by how long fatigue and “brain fog” last after CAR T.

Dr. Cirstea

“Many patients after CAR T therapy experience lingering side effects. And low blood counts can manifest as fatigue. There’s also this phenomenon of chemobrain where patients are a little bit foggy, and don’t feel like they can focus well. EDIT And also sleep issues. All of those technically within in three to four months should improve.”

If these conditions don’t improve, your team may consider the possibility of delayed neurotoxicity, especially with certain myeloma products, and refer you for a neurological evaluation.

SEGMENT 7: QUALITY OF LIFE AFTER CAR T

So what does life look like after CAR T, especially for lymphoma patients worried about infections and grandchildren with runny noses?

Dr. Spiegel says there’s usually a difficult first month, followed by gradual recovery.

Recovery time depends largely on how severe your CRS and neurotoxicity are. Some patients bounce back quickly; others need rehab.

Dr. Spiegel

“I have patients that are working within a week of getting out of the hospital. (EDIT) And then, I have a patient that had significant neurotoxicity that lasted a long period of time, and he’s still getting back on his feet.

On infection risk and seeing loved ones—especially young children—Dr. Spiegel focuses on balance.

Dr. Spiegel

“So I think you have to consider a group of people that you trust. If they’re sick, stay away. But I always tell people, ‘You go through this therapy so that you can enjoy your life.’ So, to tell someone, ‘Don’t see your grandchildren for six months,’ to me, that’s a little bit difficult.”

OUTRO

For patients like Alex, and for anyone trying to understand what CAR T-cell therapy might mean for their body, their family, and their future, one thing comes through clearly.

CAR T is not a single moment, but a process. It involves preparation, close monitoring for side effects, the support of a caregiver, and a recovery timeline that can look different for each person. While the treatment carries real risks, those risks are carefully managed, and many patients go on to experience meaningful and lasting responses.

If you’re considering CAR T-cell therapy, these conversations can be a helpful starting point. Talking with your oncologist about where CAR T fits into your treatment plan, connecting with a social worker or nurse navigator about caregiving and resources, and hearing from others who’ve been through it can all help you feel more prepared for what lies ahead.

BMT InfoNet offers several ways to support that process — including peer support programs, online CAR T support groups, and a free booklet called CAR T-cell Therapy: What to Know Before, During, and After. You can find these resources at BMTInfoNet.org, or request a booklet by phone at 888-597-7674. You can also find links in the show notes.

One Last Thought
So, before we wrap up, I just want to leave you with this.

CAR T-cell therapy represents some of the most advanced science we have right now — but living through it is still a very human experience. There can be hope and relief, fear and uncertainty, progress and setbacks, sometimes all at once.  None of that means you’re doing it wrong. It simply means you’re living inside something complex.

Whether you’re the one receiving CAR T, or the one standing beside someone who is, it’s okay if clarity comes slowly. It’s okay if confidence wavers. What matters is that you keep asking questions, keep seeking information, and keep giving yourself permission to take this one step at a time.

This course you’re on. It asks a lot of you. Likely more than you ever expected. But you’re the one at the helm, navigating what comes next. You’re the one making decisions, asking questions, and doing the hard work day by day. We’re not here to steer the ship for you — just to help you understand what’s ahead, so you’re not navigating in the dark. Alone.

Until next time —

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