Your Health After Allogeneic Transplant

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.

Our Deep Dive today focuses on your health after an allogeneic stem cell transplant — a transplant that uses donor cells — and the long-term considerations that can emerge months or even years down the road. We’ll explore what “late effects” really means, why ongoing follow-up care matters long after recovery, and how patients and care partners can better understand the role of monitoring, prevention, and communication in protecting long-term health.

But before we get there, we’re going to take a quick look at a recent headline examining dietary supplements — and what the latest research says about whether they actually help prevent cancer.

Let’s get started.

A Few Updates

Cancer and Supplements

For this week’s news update, we’re revisiting a topic we’ve touched on before — dietary supplements — but from a different angle. In an earlier episode, we focused on safety and regulation, especially for people with complex medical histories. This time, the question is broader: do supplements actually help prevent cancer?

A recent article in The Washington Post reviews findings from large clinical trials, and the overall message is clear: despite widespread use, most supplements have not been shown to prevent cancer.

When products like beta-carotene, vitamins C and E, selenium, folic acid, and vitamin A were tested in rigorous randomized trials, they did not demonstrate meaningful cancer prevention benefits. In some cases, risk increased. Vitamin E was linked to a 17 percent higher risk of prostate cancer. Beta-carotene was associated with higher rates of lung cancer in smokers and increased stomach cancer risk in one study. In a trial involving people with a history of colon polyps, folic acid did not reduce cancer risk and was linked to higher prostate cancer incidence in men.

The article also notes that in a study of women receiving chemotherapy for breast cancer, those taking antioxidant supplements had a higher risk of recurrence, possibly because antioxidants may interfere with how certain treatments work. Multivitamins, however, were not associated with increased risk in that study.

For transplant and CAR T survivors, this matters. Many people use supplements, often without discussing them with their care team. But supplements can interact with medications or affect immune and liver function — especially during treatment or recovery.

The takeaway is straightforward: before adding any supplement, have that conversation. What’s safe or appropriate depends on your specific health history, medications, and recovery path.

We’ll include a link to the full article in the show notes.
 

A Quick Note

Before we keep going, just a quick note.

Over the past several weeks, we've been really grateful to hear from so many of you — sharing what's been on your mind, what questions you're sitting with, and what topics you'd like us to dig into as we move through this first season of Thrive!

As we get closer to wrapping up Season One, we want to make sure that door stays open. If something in the podcast has resonated with you — if it's answered some lingering questions, made you feel more prepared before an appointment, or simply less alone in what you're going through — we'd welcome hearing about it. We may weave a few of those reflections into our final episodes as a way of honoring the experiences this community carries. You can reach us anytime at thrive@bmtinfonet.org.

And if you're looking for connection between episodes, BMT InfoNet's Facebook community is a good place to find it. Patients, survivors, and care partners are there every day — sharing what they're learning, asking the practical questions that come up after transplant or CAR T, and staying connected to programs, events, and resources that can help. You'll find the link in the show notes.
 

Something That May Help

Living with graft-versus-host disease often means constantly adjusting — to symptoms, to medications, and to whatever your body happens to be doing this week. It also means learning to manage symptoms that don't always follow a clear pattern.

I want to share something that may help.

BMT InfoNet offers support groups specifically for adult transplant survivors living with graft-versus-host disease. These groups are facilitated by experienced professionals and provide a supportive space to talk openly about what you're experiencing, ask questions, and hear from others navigating similar challenges.

Conversations often focus on managing symptoms, coping with side effects, communicating with care teams, and maintaining quality of life over time. Just as importantly, they offer connection with people who truly understand what living with GVHD looks like day to day — and for many, simply being in conversation with others who get it can ease the sense of going through this alone.

If this sounds helpful, you'll find a link in the show notes. You can also visit bmtinfonet.org and look under Support Groups in the Events tab to learn more about upcoming GVHD Support Groups. There, you'll also find groups available for spouses and partners, parents of children with GVHD, and young adults living with GVHD.
 

Deep Dive -  Late Effects Following Allogeneic Transplant

For Mark, mornings have always belonged to the dog.

Long before transplant, his favorite part of the day was that first walk. The quiet streets. The early morning light. The dew on the grass. The dog tugging gently at the leash, eager to find that next curious scent.

After transplant, those walks meant even more. They weren’t just routine anymore—they were proof. Proof that he was still here.

So when Mark heads out one morning and notices himself slowing down, it catches his attention. He’s not out of breath. He’s not dizzy. The walk just feels … heavier than it used to. He finds himself paying more attention to his breathing than to the morning around him.

At first, he shrugs it off. But then he starts to think about the moments before the walk—about how his body feels stiff when he gets out of bed. How it takes longer to get moving. How he hadn’t really connected those things until now.

Is this just part of recovery? Is this something everyone feels after an allogeneic stem cell transplant? Or is this my body asking for a little more attention?

Standing there with the leash in his hand, Mark starts to wonder if getting through the transplant was just the beginning.
 

HOST INTRODUCTION 

Welcome to this week’s Thrive! Deep Dive.

An allogeneic stem cell transplant doesn’t just help treat disease — it replaces your immune system entirely. And while the transplant itself may be over, recovery doesn’t end when you leave the hospital. Rebuilding, healing, and long-term care continue well beyond those first months.

Today, we’re taking a Deep Dive into what comes after an allogeneic stem cell transplant — specifically, the late effects that can emerge months or even years later, and why long-term follow-up care plays such an important role in protecting both your health and your quality of life.

Our guide for this conversation is Dr. John McCarty, Medical Director of the Cellular Immunotherapy and Transplant Program at Virginia Commonwealth University’s Massey Cancer Center. In his 2025 BMT Survivorship Symposium presentation, Dr. McCarty walks through what survivorship really looks like after an allogeneic stem cell transplant — from how the immune system rebuilds, to the kinds of changes transplant teams monitor over time, to the everyday choices that can help support recovery.

This episode isn’t about assuming something is wrong. And it’s not about being on constant alert. It’s about understanding what your body has been through, knowing which changes deserve attention, and feeling more confident as you navigate life after transplant — with clarity, support, and a long-term view.

SEGMENT 1:  WHAT IS AN ALLOGENEIC STEM CELL TRANSPLANT?

So what makes an allogeneic stem cell transplant different from other therapies?

At its core, an allogeneic stem cell transplant uses blood-forming stem cells from a donor. That donor might be a family member, an unrelated volunteer, or, in some cases, an umbilical cord blood donor. Those cells can be collected from the donor’s bone marrow, from the bloodstream, or from stored cord blood.

But as Dr. McCarty explains, this treatment is about much more than replacing damaged cells.

Dr. McCarty  |  02:18
“It’s much more than just giving someone clean bone marrow. What we are also adding in is a new immune system. The cells from the donor are moving into your body. And they are going to be less tolerant of the cancer being treated.”

That immune system is what gives an allogeneic stem cell transplant its power — and also what makes recovery more complex.

Before the donor cells are given, patients receive chemotherapy, often called a conditioning or preparative regimen. This treatment creates space in the bone marrow and suppresses the patient’s existing immune system, allowing the donor cells to take hold and begin functioning.

Once the donor cells are infused through an IV, they travel through the bloodstream, settle into the bone marrow, and begin to grow and multiply.

During this time, patients take medications that suppress immune activity. These medications help prevent rejection of the donor cells and reduce the risk of graft-versus-host disease, or GVHD — a condition in which the donor’s immune cells react against the patient’s tissues.

Because the immune system is still fragile during this period, everyday life can often look very different. Precautions around infection, activity, and exposure become part of daily routine — not as a setback, but as part of giving the new immune system time to rebuild.

SEGMENT 2: THE IMPORTANCE OF LONG TERM FOLLOW UP

One of the central messages in Dr. McCarty’s presentation is that survivorship after an allogeneic stem cell transplant is not a short chapter. It’s an ongoing phase of care — one that evolves over time.

Dr. McCarty |  05:31
“….The duration and the type of post transplant follow-up for each patient is very individualized, but it goes for at least 10 years.”

That timeline can sound surprising at first. But it reflects how much transplant teams now understand about the long-term effects of treatment — and how proactive monitoring can help protect health years down the road.

In the early phase after transplant, especially during the first couple of years, follow-up care is focused on a few key priorities. Teams are watching closely to make sure the disease remains in remission. Besides monitoring for relapse, they often are managing graft-versus-host disease and supporting the immune system as it recovers.
As time goes on, that focus gradually shifts.

Rather than concentrating primarily on the cancer itself, long-term follow-up care expands to include the whole body — the heart, lungs, liver, kidneys, bones, hormones, and mental health. The goal becomes maintaining overall health, identifying changes early, and addressing issues before they interfere with quality of life.

Some of that care continues within the transplant program or survivorship clinic. Some of it happens with your local oncologist or primary care provider. What matters most is communication — making sure everyone involved understands your transplant history and is working together to support your long-term health.

SEGMENT 3: HOW TO REDUCE LONG-TERM RISKS

When Dr. McCarty talks about limiting late effects after an allogeneic stem cell transplant, he comes back again and again to one central idea: prevention.

Preventive health maintenance is one of the most effective tools we have for protecting long-term health after transplant. And it works best when care teams monitor the whole body over time — not because something is expected to go wrong, but so changes can be identified early, when they’re most treatable.

You don’t need to remember every test or screening. What matters is knowing that your transplant team is paying attention to all the systems that may have been affected by treatment — and that this monitoring is designed to protect the health you worked so hard to regain.

One area that requires especially careful attention is the immune system itself. After an allogeneic stem cell transplant, previous immunities are erased, and protection has to be rebuilt gradually.

Vaccinations typically begin three to six months after transplant and follow a schedule guided by your transplant and long-term follow-up team. 

Skin health is another important part of long-term follow-up. Because transplant patients may have been exposed to chemotherapy, radiation, or ongoing immunosuppressive medications, the skin can be more sensitive to sun damage.

Dr. McCarty  |  09:15
“We recommend that patients get annual skin exams — and if you are someone who has had previous skin-related sun injury or prior skin cancers, then more frequent exams, as indicated by your dermatologist.”

Bone health is another area Dr. McCarty stresses needs close, ongoing attention after an allogeneic transplant.

Bone thinning is common after transplant, and a significant number of patients experience some degree of bone loss over time. Risk factors include long-term steroid use, certain immunosuppressive medications, hormone changes, kidney issues, and prolonged inactivity during treatment and recovery.

To protect bone health, Dr. McCarty recommends regular bone density testing, often every two years, along with monitoring calcium and vitamin D levels. 

Beyond immune recovery and bone health, long-term follow-up also includes routine monitoring of other systems that may have been affected by transplant and its treatments. This includes hormone and metabolic health, liver function, vision, and reproductive health. 

Long-term follow-up also includes monitoring heart and lung health, particularly for patients who received certain types of chemotherapy, radiation, or have ongoing graft-versus-host disease, so changes can be identified early and addressed promptly.

SEGMENT 4: QUALITY OF LIFE
Long-term survivorship after an allogeneic stem cell transplant isn’t only about lab values and screenings. It’s also about how life feels — physically, emotionally, and in relationships.

Some of the changes that affect quality of life after transplant aren’t always easy to talk about. But they matter. 

One of those areas is sexual health.

Certain chemotherapies, including high-dose cyclophosphamide, and radiation — especially total body radiation — can affect sexual function in both men and women. Hormonal changes after transplant can lead to symptoms similar to menopause, including vaginal dryness, discomfort with sex, or changes in libido. Low testosterone can also affect energy and desire.

These changes are common, and they’re treatable.

Fertility is another concern many patients have after allogeneic stem cell transplant.

Infertility after transplant is not a certainty. Some people recover fertility naturally over time, but others do not. Because of this, Dr. McCarty encourages conversations about fertility preservation — such as sperm or egg banking — before transplant, whenever possible. 

Cognitive changes can also be part of the survivorship experience.

Dr. McCarty notes that cognitive challenges — often referred to as “chemo brain” — occur in many allogeneic stem cell transplant patients and are actually more common after chemotherapy than transplant itself. These changes may include difficulty concentrating, memory lapses, or slower processing speed.

Activities that support cognitive health include mental stimulation, safe social interaction, and staying engaged with daily life. Reading, puzzles, listening to audiobooks or podcasts, learning new skills, and maintaining relationships can all help support brain function during recovery.

Emotional and psychological health plays a central role in long-term survivorship.

Dr. McCarty  |  36:06
“The people who do the best are people who have good psychological health; and you can have good psychological health by keeping in touch, exercising and so on.”

Dr. McCarty explains that maintaining psychological health is closely tied to staying engaged with life — preserving relationships, remaining connected to work or school when possible, and seeking support when it’s needed.

SEGMENT 5: WHAT TO KNOW ABOUT NEW CANCERS AFTER TRANSPLANT

As part of long-term follow-up after an allogeneic stem cell transplant, one topic that often raises concern is the risk of developing a second cancer later in life.

New cancers can occur after transplant, and the risk is higher than in the general population. At the same time, the overall risk remains relatively low.

Over the long term, the cumulative incidence of new cancers is estimated to be around 10 to 12 percent at fifteen years after allogeneic transplant. That means most transplant survivors do not develop a second cancer, even many years out.

When new cancers do occur, timing matters.

New blood cancers, such as leukemia or other hematologic malignancies, tend to appear earlier—often within the first few years after transplant—and are usually linked to certain types of chemotherapy or radiation received before transplant.

New solid tumors typically develop much later, sometimes ten to thirty years after treatment. These may include skin cancers, breast cancer, oral cancers, or cancers of the central nervous system.

Age at transplant also influences risk. People who undergo transplant at a very young age tend to have a higher lifetime risk of new cancers, related to factors such as radiation exposure, immune suppression, graft-versus-host disease, and viral infections during treatment.

The purpose of understanding this risk isn’t to create worry. It’s to explain why staying connected to long-term follow-up care matters—so changes can be identified early, when treatment is often most effective.

SEGMENT 6: LIVING WELL AFTER ALLOGENIC STEM CELL TRANSPLANT

As people move further out from transplant, long-term care isn’t only about monitoring for problems. It’s also about protecting strength, independence, and the ability to live fully.

One area that comes up again and again is movement — not as performance, but as part of recovery.

DR. McCARTY  |  20:22
“What I can’t speak more highly about is exercise. Exercise. Exercise. Before. During. After chemo. And after the transplant.”

What he’s emphasizing here isn’t intensity or pushing limits. It’s consistency.

Regular movement supports bone health, heart and lung function, balance, energy, and overall quality of life. And it can be adapted to how someone feels on any given day. Walking, stationary biking, gentle strength training, yoga, tai chi, or Pilates can all be part of that picture.

Over time, staying engaged in movement is also closely tied to regaining physical function.

Dr. McCarty  |  35:40
“…Physical functioning typically returns to 75% of pre-transplant level at one year. 85% of people return to work or school. Only about a quarter have any type of physical limitations which might affect some of their work after we go through the treatment and usually it’s associated with people with persistent graft versus host disease.”

That doesn’t mean recovery looks the same for everyone, or that there’s a timeline anyone has to meet. But it does show how small, steady efforts can support long-term strength and independence.

Lung health is another important part of living well after transplant.

Certain chemotherapies, radiation, infections, and graft-versus-host disease can affect lung function over time. Because of this, transplant teams often monitor lung health through pulmonary function tests and imaging, even when someone feels well.

One of the most practical ways to support lung health is by avoiding exposures that strain the lungs. Patients are strongly encouraged not to resume smoking or vaping after transplant, and to avoid secondhand smoke and environments with heavy particulate exposure, such as wood-burning fires or ovens.

Noticing and reporting changes in breathing, stamina, and exercise tolerance — even subtle ones — can help care teams identify issues early.

Heart health also plays a role in long-term survivorship.

Chemotherapy, radiation, metabolic changes, and hormonal shifts can all influence cardiovascular risk after transplant. Some centers now include cardio-oncology specialists who focus on the heart health needs of people treated for cancer.

Here, too, patients play an important role. You’re often the first to notice when something feels different. Reporting new symptoms — like fatigue, shortness of breath, palpitations, or changes in exercise tolerance — allows providers to evaluate concerns early and adjust care when needed.

Taken together, movement, lung health, and heart health support more than physical recovery. They support confidence, independence, and the ability to re-engage with daily life in ways that feel sustainable over time.

OUTRO

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

An allogeneic stem cell transplant doesn’t end when the hospital stay does. What follows is a long period of recovery and adjustment — and long-term follow-up care plays a central role in supporting health, function, and quality of life over time.

As we’ve heard, preventive care after transplant isn’t about expecting problems. It’s about monitoring the body thoughtfully, identifying changes early, and making sure survivors have the support they need to stay well — physically, emotionally, and socially.

Dr. McCarty  |  17:06
“Just keeping up on what is the usual standard of health maintenance is very important. You did the transplant in order to maintain excellent health, so let’s make sure nothing else happens.”

We’re grateful to Dr. John McCarty for sharing his expertise and his perspective on what it truly means to thrive after an allogeneic stem cell transplant.

If you’d like to explore this topic further, you can watch Dr. McCarty’s full presentation, ‘Limiting Late Effects Following a Transplant Using Donor Cells,’ available through BMT InfoNet. And the link is in the show notes.

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

If you’ve been listening and thinking, this feels like a lot, that’s understandable. An allogeneic stem cell transplant changes your body in ways that don’t always announce themselves all at once. Some changes show up early. Others take time. And many unfold quietly, in the background of everyday life.

What matters most isn’t catching every detail — it’s knowing that paying attention doesn’t mean living in fear. It means staying connected. It means noticing when something feels different. And it means trusting that long-term follow-up care exists to support you, not to keep you on edge.

Thriving after transplant isn’t about getting back to who you were before. It’s about learning how to live well in the body you have now — with patience, support, and room to grow into what comes next.

In our next episode, we’ll continue this conversation by taking a closer look at late effects after an autologous stem cell transplant — how they can show up over time, and how understanding them can help you feel more prepared and less alone as you move forward.

Until next time —

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