Managing Infections After Transplant and CAR T-cell Therapy

Transcript:

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

In today’s episode, our deep dive focuses on managing infections after stem cell transplant or CAR T-cell therapy — what’s common, what’s worth watching for, and how people can protect themselves while still living their lives.

But before we get there, we’ll take a quick look at a few recent headlines — from access to CAR T-cell therapy, to a newly approved treatment for a serious post-transplant complication, and what patient-reported outcomes are teaching us about life after treatment. Let’s get started …

A Few Updates
CAR T ACCESS AND AVAILABILITY
For some people, the challenge isn’t whether CAR T-cell therapy could help — it’s whether they can actually get access to it. Where someone lives, how quickly they’re referred, and whether a treatment center has the capacity to deliver care can all shape what happens next.

In a recent article from Targeted Oncology, experts examined the factors that continue to limit access to CAR T-cell therapy, even as its use expands.

The article explains that access challenges go beyond medical eligibility. Many patients experience delays due to limited treatment capacity at specialized centers, shortages of trained staff, or complex referral pathways that slow the process. Even when CAR T is an appropriate option, logistical hurdles can prevent patients from receiving treatment in a timely way.

Cost and reimbursement also play a major role. Differences in insurance coverage, prior authorization requirements, and hospital resources can affect whether patients are approved for therapy and how quickly treatment can begin. These barriers often hit patients in rural areas or those treated outside large academic centers the hardest.

Experts emphasized that improving CAR T access will require coordinated efforts — including better education for community oncologists, expanded treatment capacity, and policy changes that support sustainable reimbursement. The takeaway is that scientific progress alone isn’t enough; ensuring patients can actually receive CAR T therapy depends on addressing these real-world system challenges.

FDA APPROVES FIRST TA-TMA THERAPY
For many transplant patients, some of the most serious complications don’t arise during treatment itself — they can appear afterward. When that happens, having an effective treatment option can make a meaningful difference for both patients and care teams.

In a recent announcement, the FDA approved YARTEMLEA, developed by Omeros, as the first and only therapy specifically indicated to treat transplant-associated thrombotic microangiopathy, or TA-TMA.

TA-TMA is a rare but very serious complication that can occur after stem cell transplant. It affects small blood vessels and can lead to organ damage, particularly involving the kidneys. Until now, there were no FDA-approved treatments specifically for this condition, leaving clinicians to rely on supportive care or off-label approaches.

The approval of YARTEMLEA is significant because it targets part of the immune and inflammatory pathway believed to drive TA-TMA. In clinical studies, patients treated with the therapy showed improved survival and signs of disease control compared with historical outcomes.

Experts note that having a treatment specifically approved for TA-TMA may help clinicians recognize the condition earlier, intervene more confidently, and improve outcomes for patients who develop this complication. For patients and families, this approval represents progress in an area where options have long been limited.

PATIENT-REPORTED OUTCOMES AFTER TREATMENT
For many people after transplant or CAR T-cell therapy, recovery isn’t defined only by lab results or scans — it’s shaped by how they feel day to day, and how life actually looks after treatment.

A recent study published in Blood Advances examined patient-reported outcomes in people who had undergone stem cell transplant or CAR T-cell therapy, focusing on symptoms and quality of life as reported directly by patients themselves.

Researchers found that patient-reported outcomes often highlight ongoing challenges that may not always be captured during routine clinical visits. These included fatigue, physical limitations, emotional distress, and cognitive changes that could persist well beyond the initial recovery period.

The study also showed that these experiences varied widely from person to person, underscoring that recovery timelines are not one-size-fits-all. By routinely collecting patient-reported outcomes, care teams may be better equipped to identify concerns earlier and tailor support to individual needs.

The key takeaway is that listening to patients adds an essential layer to post-transplant and CAR T care. Combining medical data with patients’ lived experiences can help ensure recovery is not only clinically successful, but meaningful in real life.

A Quick Note
Before we keep going, just a quick note.

If you’re on Facebook and looking for connection in between episodes of Thrive!, BMT InfoNet has an active Facebook community where patients, survivors, and care partners share experiences, ask practical questions, and stay up to date on resources, programs, and events. You’ll find links to BMT’s Facebook in the show notes.

And as always, if Thrive! is helpful for you, one of the simplest ways you can support the show — and help more people find these conversations — is by following or subscribing, and sharing an episode with someone who might benefit.

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.

Something That May Help
Sometimes it helps to step out of information mode and hear how other people have actually lived through this.

BMT InfoNet shares a large collection of patient stories — firsthand accounts from patients, survivors, and care partners describing what life has looked like for them before, during, and after transplant or CAR T-cell therapy.

Some of these stories are written, and others are shared through video. Together, they reflect a wide range of experiences — from preparing for treatment, to navigating complications, to finding a new sense of normal over time.

Sometimes hearing how someone else has lived through a similar chapter can help put your own experience into perspective, or simply remind you that you’re not the only one facing these questions and uncertainties.

If you’d like to explore these stories, you’ll find a link in the show notes under, Patient Stories.

Deep Dive - Managing Infections After Treatment
As you sit in your living room, relaxed into your favorite chair, the evening settles in around you.

You listen. Silence. No more hospital monitors beeping. No more PA announcements paging doctors to some far-off room.

It’s quiet now. And you sit in gratitude. You’re home. You’re here. Still recovering … a few months post-transplant, but stronger than you were.

Your phone buzzes. A family group text. They’re getting together this weekend — cousins, grandkids, laughter, food. You picture it for a moment… and then you pause.

“It’s still too soon,” you remind yourself. Too many hugs, too many unknowns. You type a quick message back, thankful to be included, even if you can’t be there yet.

This is what recovery looks like now. Balancing gratitude with vigilance, connection with caution.

HOST INTRODUCTION 
In this week’s Thrive! Deep Dive, we’re focusing on a topic that becomes part of daily life for many people after transplant or CAR T-cell therapy: managing infections.

For patients and caregivers alike, this phase of recovery often means learning how to balance caution with confidence — understanding why infection risk exists, what to watch for, and how thoughtful, everyday choices can help you stay well as your immune system rebuilds.

The risk of developing an infection depends on a number of factors, including the type of therapy you receive — whether it’s CAR T-cell therapy, an autologous transplant using your own stem cells, or an allogeneic transplant using donor cells.

Our guide for this conversation is Dr. Gowri Satyanarayana — often known as Dr. Gowri — Medical Director of the Transplant and Oncology Infectious Disease Program at Northside Hospital in Atlanta. She specializes in diagnosing and managing infections in cancer and transplant patients and has served as principal investigator on multiple clinical trials focused on improving how infections are detected and treated.

In this Deep Dive, we’ll walk through what infection risk really looks like after transplant or CAR T-cell therapy — how it varies by treatment type, what symptoms should never be ignored, and the practical steps that can make a meaningful difference during recovery.

SEGMENT 1:  UNDERSTANDING NEUTROPENIC FEVER
Let’s start with one of the most important — and urgent — topics: neutropenic fever.

Neutrophils, the white blood cells that form your first line of defense against infection, are often wiped out by chemotherapy. After transplant or CAR T-cell therapy, their numbers can fall dangerously low, leaving you vulnerable for several days or weeks.

Dr. Gowri  |  
“This is a very fragile period when patients can be very susceptible to infection. Having a fever can be the only sign of infection during this time.”

Even a mild fever should never be ignored. During neutropenia — when the white-cell count drops below 500, sometimes even to zero — a fever may be your body’s only warning sign.

Patients might also experience chills or rigors — those deep, body-shaking chills that make you feel intensely cold. Blood pressure can drop; breathing may become difficult; confusion can set in.

Contact your transplant or CAR T-cell care team right away or go to the emergency room. Hospitals follow clear protocols: IV antibiotics within the first hour, blood and urine cultures, a chest X-ray, and scans to locate infection sources. Anti-fungal medication may also be started depending on symptoms.

This vulnerable phase is temporary — but vigilance during it can make all the difference.

SEGMENT 2:  THE FOUR CATEGORIES OF INFECTIONS
After transplant or CAR T-cell therapy, infections generally fall into four categories: bacterial, fungal, viral, and parasitic.

1)    Bacterial Infections

Dr. Gowri  |  
“Bacterial infections can actually involve a variety of sites within the body. These infections often come from the normal bacteria living   inside of you, which get disrupted by chemotherapy or other medications given at the time of your CAR T-cell therapy, autologous transplant, or allogeneic transplant. These bacteria can also come from outside of you.”

Bacteria can cause pneumonia, urinary-tract infections, bloodstream infections, and skin infections.

One is C. difficile, which causes severe diarrhea and abdominal pain — especially during the first 100 days after transplant — affecting about 8 to 13 percent of patients. Treatment involves antibiotics, and for recurrent cases, sometimes a fecal transplant to restore healthy gut bacteria.

2) Fungal Infections
Fungal infections are typically caused by yeasts that live naturally in the body, like Candida and Cryptococcus, and molds, such as Aspergillus and Mucor, that live in the environment, often in soil or decaying plant matter, or in damp or poorly ventilated buildings.

Fungal infections are rare in CAR T-cell recipients and occur in <2% of patients transplanted with their own stem cells. The incidence is higher in patients transplanted with donor stem cells (approximately 7%).

Patients typically receive anti-fungal medication before transplant or CAR T-cell therapy to reduce the risk of developing a fungal infection. If an infection does occur, it is treated with an anti-fungal medication. In severe cases, surgery may be required.

3) Viral Infections
Some viruses reactivate from old infections — like herpes simplex or shingles.

Dr. Gowri  |  
“These viruses often cause an infection that looks like small blisters filled with fluid. They can cause an infection on the skin, genital area, lips, inside of the mouth, or even infect the brain. A lot of patients describe these lesions as painful. These infections are treated with an antiviral medication.”

Other viruses, such as cytomegalovirus[1.1] (CMV), can cause fever, cough, diarrhea, or vision changes. Respiratory viruses including influenza, RSV, and parainfluenza are also common. Most require supportive care until recovery.

Norovirus — often called the “cruise-ship virus” — can cause persistent diarrhea and nausea, and is most common in patients who have had a transplant using donor cells. There is no direct cure, but symptoms can be managed closely with your medical team.

4) Parasitic Infections
The main parasitic infection patients should know about is toxoplasmosis. It can occur either from reactivation of a prior infection or through new exposure — such as eating undercooked or contaminated meat, contact with contaminated soil, or handling cat feces. Symptoms may include fever, headaches, or changes in thinking.

Transplant teams screen for toxoplasmosis before treatment and may prescribe preventive medication. Patients are advised to avoid handling cat litter or gardening until cleared by their team.

These four infection types may sound intimidating — but knowledge and preparedness are powerful tools for staying safe and confident through recovery.

SEGMENT 3:  HOW PATIENTS AND CARE PARTNERS CAN HELP PREVENT INFECTIONS
Infection prevention starts with everyday habits.

Dr. Gowri  |  
“You will receive specific guidance from your transplant and CAR T-cell team. However, the majority of centers will recommend hand washing, because strict hand hygiene is very much the ‘bread and butter’ of infection prevention.”

Washing your hands with soap and water for at least twenty seconds — especially before eating, after using the bathroom, or after being in public — remains one of the most effective ways to reduce risk. 

Masking in crowded or enclosed spaces adds another layer of protection.

Dr. Gowri also reminds patients to avoid gardening, yard work, or repotting plants for six to twelve months and to let others handle cat litter. Avoid well water when possible, and always practice food safety — fully cook meats, wash produce, and refrigerate leftovers promptly.

These habits may seem small, but together they form a powerful line of defense while your immune system rebuilds. And as it grows stronger, you’ll gradually return to more of your usual activities.

SEGMENT 4:  THE OPPORTUNITY OF TRAVEL

Dr. Gowri  |  
“For those patients who want to travel outside of the US, it will generally need to be approved by your individual care team.”

Travel depends on overall recovery — immune function, medications, and complications. Plans for travel should be discussed in advance with your care team who can advise whether you will need vaccines, medications, or access to care while away.

Travel represents progress — with good planning, it can safely become part of life again.

SEGMENT 5:  VACCINATIONS AFTER TRANSPLANT AND CAR T

Dr. Gowri  | 
“Vaccinations which are given after CAR T, autologous, and allogeneic transplant — while these are general guidelines for getting specific vaccines at specific time points after CAR T and transplant, the vaccine schedule is often individualized. Meaning, it’s adjusted for each patient based on if you are receiving additional chemotherapy, after CAR T, autologous or allogeneic transplant, and if you also have graft-versus-host disease after allogeneic transplant. ”

Even if you were vaccinated before, those protections often fade during treatment. Your care team will restart your vaccines on a personalized schedule based on your recovery.

Dr. Gowri  |  
“Often, the first set of vaccines are recommended as early as three months after your CAR T or autologous transplant and six months after your allogeneic transplant.”

The process begins with core vaccines — such as pneumonia, influenza, and other non-live vaccines — then expands over time as your immune system strengthens. Live vaccines, including MMR or shingles vaccines, are typically delayed until your immune system is fully recovered.

Think of vaccination as a sign of progress: each shot marks another step toward long-term protection and a return to normal life.

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

Infections after transplant or CAR T-cell therapy can sound intimidating — and the risk is real. But awareness, preparation, and a strong partnership with your care team make a meaningful difference. Knowing what to watch for, when to speak up, and how to protect yourself puts you in a much stronger position during recovery.

Dr. Gowri emphasizes how powerful that knowledge can be.

Dr. Gowri  |  
“Your education and knowledge about specific infections and their treatment will help you if you develop one after your transplant or CAR T-cell therapy.”

That understanding helps patients act quickly, ask informed questions, and feel more confident navigating what can otherwise feel overwhelming.

And caregivers matter deeply in this process. Your attention, encouragement, and advocacy play a vital role in keeping your loved one safe and supported — especially during moments when patients may feel vulnerable or unsure.

To explore this topic further, you can watch Dr. Gowri’s full presentation and read the transcript at BMTInfoNet.org. You’ll find many additional resources there to support life after transplant or CAR T-cell therapy. Links are in the show notes.

One Last Thought
Before we wrap up, I just want to say thank you for spending this time with me.

Topics like infections can feel heavy — especially when you’re already carrying so much. My hope is that today’s conversation offered not just information, but a sense of steadiness and reassurance as you move forward.

Next time, we’ll shift our focus to another important part of recovery that often doesn’t get enough attention: bone health after transplant or CAR T-cell therapy. It’s a topic that can quietly affect strength, mobility, and long-term wellbeing — and understanding it early can make a meaningful difference.

Until next time —

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