Bone Health after Transplant and CAR T

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 going to spend most of our time talking about bone health after transplant and CAR T — why it matters, how treatment can affect bone strength and fracture risk, and what patients and care partners should be paying attention to over the long term.

But before we get there, we’re going to take a quick look at a few recent news updates — including new treatment approaches showing promise for people with multiple myeloma, why more people are surviving cancer and what that means for life after treatment, and the growing demands on older spouses during long-term recovery.

Let’s get started.

A Few Updates

Today, we’re looking at three recent articles from the Washington Post that explore how cancer care is evolving — and what those changes mean for patients, survivors, and care partners living with the long-term effects of treatment.

NEW HOPE FOR MULTIPLE MYELOMA PATIENTS

For many people living with multiple myeloma, one of the hardest realities is knowing that the disease often comes back — even after aggressive treatment.

New research suggests that may be starting to change. Scientists are reporting striking results from a combination immunotherapy approach that’s helping many patients achieve longer-lasting remissions, even after their cancer has returned.

The therapy combines two drugs, Tecvayli and Darzalex Faspro, that work together in different ways to help the immune system attack myeloma cells. In a clinical trial of 587 patients who had undergone up to three prior treatments, more than 80 percent who received this combination were still alive without their cancer spreading after nearly three years. By comparison, 30 percent of patients receiving standard treatment achieved the same result.  

The treatment isn’t without risk: 71 percent of patients on the combination had serious reactions, including infections, and 7 percent died, though the control group also had high rates of serious reactions.  

Hearn Jay Cho, chief medical officer of the Multiple Myeloma Research Foundation, said these results are unprecedented. The combination therapy, as he noted, didn’t just outperform the control group, it “smashed it.” The foundation is now researching the optimal dosing.  

The findings, published in the New England Journal of Medicine, suggest that advances in immunotherapy continue to expand what may be possible for patients facing difficult treatment decisions, even after standard therapies have stopped working.  

For patients and care partners, the takeaway isn’t that this is a cure, but that meaningful, measurable progress is being made. And for those facing difficult treatment decisions, it’s another sign that the landscape of blood cancer care continues to evolve.

WHAT LONGER CANCER SURVIVAL MEANS

For many patients and families, the goal at diagnosis is simple: get through treatment. But what happens after that is becoming an increasingly important part of the story.

According to a report from the American Cancer Society, for the first time, the five-year survival rate for all cancers has reached 70 percent, up from just 50 percent in the mid-1970s. There are now more than 18.6 million cancer survivors in the United States, with that number expected to exceed 22 million by 2035. New national data shows that more Americans are surviving cancer than ever before. Advances in early detection, targeted therapies, immunotherapy, and supportive care are helping patients live longer and, in many cases, live better.

What's striking is that survival gains aren't limited to one type of cancer. Improvements are being seen across blood cancers and solid tumors alike, reflecting how quickly treatment options have expanded over the past decade.

But longer survival also brings new challenges. As more people live years, and even decades, beyond treatment, issues like bone health, heart health, infection risk, and quality of life become central parts of recovery. Survivorship isn't just about being cancer-free; it's about staying healthy over time.

Experts caution that while survival is improving, long-term support systems haven't always kept pace, making follow-up care and survivorship planning more important than ever.

For survivors, this means it's worth asking not just "Am I cancer-free?" but "What should I be watching for now, and who's helping me manage the long-term effects of treatment?”

For patients and care partners, this shift reinforces why long-term follow-up matters. Ongoing monitoring, preventive care, and attention to late effects are now essential pieces of cancer care, not optional add-ons after treatment ends.

THE GROWING CHALLENGES FACED BY OLDER SPOUSAL CAREGIVERS

Recovery after cancer treatment often extends far beyond the clinic. It unfolds quietly at home, and for many older adults, it means caring for a spouse while managing their own aging and health challenges.

In our third and final story from the Washington Post today, the focus shifts from treatment advances to the growing burden being carried by older care partners—particularly spouses who are providing care largely on their own.

The article highlights a rising trend: more seniors in their 60s, 70s, and beyond are caring for their partners without much formal support. As people live longer with serious or chronic illness, spouses are increasingly stepping into demanding caregiving roles, managing medications, coordinating appointments, monitoring symptoms, and providing round-the-clock emotional and physical care.

Many older care partners don’t even think of themselves as caregivers. They’re simply doing what feels necessary for someone they love. It’s a role they may never have expected, but step into without hesitation.

What makes this especially challenging is that many of these care partners are dealing with their own health issues at the same time. Physical strain, emotional fatigue, social isolation, and financial stress are common. Long-term caregiving can drain savings, increase injury risk, and force difficult decisions about work, retirement, and future care, yet much of this burden remains unseen.

For families navigating life after stem cell transplant or CAR T-cell therapy, this reality may feel very familiar. Recovery can be long and unpredictable, and the demands on care partners, especially older ones, can grow over time rather than fade.

The takeaway is an important one: caregiving by older adults is not a side role. It’s central to recovery. Recognizing that burden, acknowledging the financial and emotional toll, and connecting care partners with support and resources are essential steps in protecting the well-being of both patients and the people who care for them.

A Quick Note

Hey — just a quick note before we move on.

If it helps to have resources and opportunities gathered in one place, BMT InfoNet’s email newsletter is a simple way to do that. It shares expert insight from symposium presentations, information about upcoming webinars and support groups, survivor and care partner stories, and other resources — all pointing you to content you can explore at your own pace.

And while many people think of the newsletter as something just for patients and families, it’s also designed for clinicians and other professionals who want to stay connected to patient-centered education and long-term survivorship issues.

You can sign up anytime — and you’ll find the link in the show notes.

And as always, if this podcast — if Thrive! — connects with you on some level, well… there’s a good chance it could connect with someone else too. That’s why we’re asking you to do us a small favor: follow, or subscribe to Thrive! on your favorite podcast platform or on YouTube, and share an episode with someone who might need to hear it. Those small actions really do help the show reach more people.

And if you ever want to offer a thought — what’s resonating, what’s not, or topics you’d like us to explore — we’d love to hear from you. You can email us anytime at thrive@bmtinfonet.org.

Something That May Help

You know, one of the hardest parts of this experience isn’t always the physical side of treatment. It’s the emotional weight that builds up over time — the anxiety, the scan-xiety, the fear, the grief, or that lingering sense of being on edge long after treatment ends.

I want to share something that may help.

BMT InfoNet offers a Directory of Mental Health Providers who have experience working specifically with people affected by stem cell transplant, CAR T-cell therapy, and related blood cancers. That includes patients, survivors, care partners, and family members.

Finding mental health support can be challenging on its own — and it can be even harder to find someone who truly understands the transplant experience. This directory is designed to help bridge that gap, connecting you with therapists and mental health professionals who are familiar with the emotional and psychological challenges that can come with treatment and long-term recovery.

The directory includes providers across the U.S., along with helpful details like areas of focus and whether they offer telehealth appointments. It’s a practical starting point if you’ve been thinking about getting support, but haven’t known where to begin.

If this sounds like something that could be helpful for you or someone you care about, you’ll find a link in the show notes — or you can go to bmtinfonet.org and look under “Find a Provider.”

Deep Dive - Managing Infections After Treatment

Maria never expected something as simple as reaching into her pantry to change her life.

A year after her stem cell transplant, she was doing everything right—eating well, easing back into walking, celebrating every milestone of recovery. Then one afternoon, she stretched up to grab a box from a shelf…and felt a sudden, sharp pain in her back.

At first, she brushed it off as a pulled muscle. But over the next few weeks, the pain lingered, and she noticed something else—her posture felt different. She didn’t stand quite as tall. Moving through her day felt harder than it had just months before.

When her doctor ordered a bone density scan, the results confirmed it: osteoporosis, likely accelerated by her treatment and recovery.

Maria had survived cancer. Now, she was faced with another challenge—protecting her bones and rebuilding strength so she could return to the active, independent life she once had.

Welcome to this week’s Thrive! Deep Dive.

Bone health isn’t something most people think about during treatment — or even right after. But months or years later, it can quietly shape strength, mobility, and independence after stem cell transplant or CAR T-cell therapy.

Changes in bone density can happen gradually during recovery, and over time they can increase the risk of fractures and loss of strength. Understanding why bone loss occurs, who’s at risk, and how it can be monitored and managed is an important part of long-term survivorship care.

Our guide for this conversation is Dr. Angeliki Stamatouli, Assistant Professor of Internal Medicine in the Division of Endocrinology at Virginia Commonwealth University’s Massey Cancer Center and Bone Marrow Transplant Clinic. For the past six years, Dr. Stamatouli has worked directly with transplant patients, helping them manage complex endocrine complications — from hormone imbalances to bone loss.

In her presentation at BMT InfoNet’s 2025 Symposium, Dr. Stamatouli explores what causes bone loss after transplant or CAR T-cell therapy, who’s at risk, and how bone health can be preserved, monitored, and treated. In this Deep Dive, we’ll walk through those insights together.

Let’s dive in.

SEGMENT 1:  WHY BONE HEALTH MATTERS

Thanks to advances in stem cell therapy, more patients are living longer, healthier lives after transplant. But that success brings new challenges—including keeping bones strong for the long haul.

Maria’s story isn’t uncommon.

The risk of bone weakness is one of the long-term health concerns for people who have had a stem cell transplant. In fact, osteoporosis occurs more frequently in bone marrow/stem cell transplant survivors than in the general population. Weak bones can lead to fractures. Because of this, it’s important for all patients to have their bone health monitored closely.  

Dr. Stamatouli  |  

“….after undergoing cancer treatments, including stem cell transplants, the rate at which bone loss occurs is much faster and a little bit more pronounced. This means that within just one year after transplant, the amount of bone density loss can be considerably more than what would happen because of natural aging.

This accelerated loss makes early awareness and prevention essential.

SEGMENT 2:  UNDERSTANDING OSTEOPOROSIS

The condition most often linked to bone loss is osteoporosis—a word that literally means “porous bone.”

Dr. Stamatouli  |  

“So, what is osteoporosis? Osteoporosis is derived from the Greek words osteo, meaning bone, and poros, meaning pore or passage. So the combination of these two words indicates a condition where bones become full of holes, more likely to fracture.”

Osteoporosis is sometimes called a silent disease because most people don’t realize they have it until they experience a fracture. Patients might notice they’re getting shorter, develop sudden back pain, or have trouble with mobility—all signs of possible spinal fractures or compression.

In the general population, osteoporosis is common, especially as we age. But after transplant, the risk can be even higher—affecting 50–75% of patients who receive a transplant using donor stem cells and up to 65% of those who undergo an autologous transplant.

SEGMENT 3:  RISK FACTORS FOR BONE LOSS

So what causes bones to weaken after treatment?

Some risks are familiar—like age, family history, and menopause—but others are specific to the transplant experience.

Dr Stamatouli  |  

“Chemotherapy can be very toxic to osteoblasts and bone marrow cells, which are the construction workers of the bone. Radiation can also lead to bone loss.”

 Dr Stamatouli  |  

The use of glucocorticoids, such as prednisone or dexamethasone, and specifically when they're used for a longer duration, more than three to six month, or medications that have been used for the management of GVHD, such as calcineurin inhibitors. One example of these medications is tacrolimus,   which some of you may be taking, could also lead to bone loss.

Other contributing factors leading to osteoporosis include:

• Low body weight or poor nutrition
• Smoking or drinking more than two to three alcoholic beverages per day
• A sedentary lifestyle
• Conditions like rheumatoid arthritis or chronic kidney disease

Even fatigue after treatment can lead to less physical activity, further weakening bones and muscles.

Understanding these risk factors helps patients and providers tailor prevention plans early.

SEGMENT 4:  MONITORING BONE HEALTH

The next step is monitoring bone health—and the key tool for that is the bone density scan, also known as a DEXA scan.

A bone density scan is an imaging test that measures bone mineral density in the spine, hip, and occasionally the wrist. It’s non-invasive, painless, and takes about 10 to 20 minutes. The amount of radiation is very low—much less than a chest X-ray.

Patients over 50 usually receive a T-score, which compares their bone density to that of a healthy young adult. A score above –1 is normal, between –1 and –2.5 means low bone density, and below –2.5 indicates osteoporosis.

For younger patients, doctors use a Z-score, comparing bone density to others of the same age and size.

Providers also use something called the FRAX tool. While not designed specifically for transplant survivors, it helps guide treatment decisions.

Dr Stamatouli  |  

“This tool takes into consideration several risk factors, including the patient's age, sex, weight, height, smoking habits, history of rheumatoid arthritis or other immune conditions, whether there is a history of fractures in the patient's parents, and the use of glucocorticoids, among others. And it calculates the 10-year probability of a major osteoporotic fracture. And when I'm saying major osteoporotic fracture, I mean a non-traumatic fracture that occurs in one of the key sites that are more commonly affected by osteoporosis, either the hip, the spine, the wrist, or the shoulder.”

In addition to scans, blood tests and periodic X-rays can reveal vitamin deficiencies or hidden spinal fractures. The goal is consistent follow-up—especially in the months after transplant when bone loss can progress quickly.

SEGMENT 5:  BUILDING STRONGER BONES – LIFESTYLE & NUTRITION

Now let’s talk about what you can do.

Diet, supplements, and exercise all play powerful roles in maintaining bone strength.

Dr Stamatouli  |  

“The first step is to make sure that we optimize calcium intake. Our goal is for each patient to take about 1,000 to 1,200 milligrams of calcium daily from diet and supplements when we have to.”

Calcium carbonate is best absorbed with food, while calcium citrate works with or without food and is better for patients with absorption issues.

But moderation is key—too much calcium from supplements can raise the risk of kidney stones.

Vitamin D is equally vital because it helps the body absorb calcium.

Dr Stamatouli  |  

“Vitamin D is crucial for bone health because it helps with calcium absorption from food in the intestine. It helps with bone mineralization and also reduces the risk of falling.”

Most patients need 1,000 to 2,000 units of vitamin D daily, and maintaining blood levels between 30 and 50 nanograms per milliliter is ideal.

Exercise is also crucial to bone health.

Dr Stamatouli  |  

“For patients who have low bone density, we suggest weight-bearing exercise, such as jumping, skipping, bench stepping, and resistance exercises like light weight training, push-ups or resistance band exercise. When it comes down to weight training, we usually suggest low weight training. We suggest avoiding bending forward and lifting weights over 10 pounds overhead. ”

Dr. Stamatouli also encourages patients to fall-proof their homes—removing tripping hazards, keeping rooms well lit, installing handrails, and storing items within easy reach.

She urges patients to follow a balanced diet (low carbohydrate, high protein), stop smoking, limit alcohol intake to less than two drinks per day, lower the dose of prednisone or other steroids, and maintain good vision.

SEGMENT 6:  TREATMENT OPTIONS

Despite lifestyle changes, some patients will still need medication to strengthen their bones. Treatment decisions depend on age, steroid use, and bone density results.

There are three major categories of osteoporosis medications, and they work in different ways. The first category is called antiresorptive. Antiresorptives slow bone breakdown. The second is anabolic medications, which stimulate bone formation. The third category is hormonal medications, which replace estrogen or testosterone when patient levels are low.

For most transplant survivors, antiresorptive medications like bisphosphonates are the first choice. These drugs—taken orally or by IV—help bones rebuild strength over time.

However, like all treatments, these drugs come with possible side effects—from mild flu-like symptoms to rare complications like osteonecrosis of the jaw or atypical femoral fractures.

Your doctor will help weigh the benefits and risks, and adjust treatment duration—typically three to five years for bisphosphonates, unless ongoing conditions require more.

OUTRO

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

Bone health may not be the first thing on your mind after stem cell transplant or CAR T-cell therapy, but as Dr. Stamatouli explains, bone loss after treatment is common and influenced by many factors.

Dr Stamatouli  |  

“In summary, bone loss is very common after stem cell transplant. There are multiple risk factors that are associated with bone loss. It could be genetics, it could be the patient’s lifestyle, it could be related to the cancer treatment per say. Regular monitoring for bone loss is essential before and after stem cell transplant. Dietary modification and lifestyle changes are very crucial to prevent bone loss and improve bone health. Bisphosphonates are the treatment of choice for managing osteoporosis.”

Taken together, her message is clear: paying attention to bone health early — and continuing to monitor it over time — can make a meaningful difference. With awareness, testing, and proactive care, osteoporosis can often be prevented or effectively managed.

I’d like to thank Dr. Angeliki Stamatouli for sharing her expertise and helping us better understand how bone health fits into life after transplant and CAR T-cell therapy.

To explore this topic further, you can watch Dr. Stamatouli’s full presentation, Bone Health and Other Endocrine Issues after Transplant or CAR T-cell Therapy, by visiting BMTInfoNet.org and selecting the Video tab. You’ll find additional resources there to support patients, care partners, and families navigating recovery. Links are in the show notes.

One Last Thought

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

Recovery after transplant or CAR T doesn’t always move in a straight line. Some effects show up early, others much later — and many of them aren’t visible to the people around you. Bone health is one of those areas that often doesn’t get attention until something goes wrong, even though it’s closely tied to strength, mobility, and long-term quality of life.

What matters most is awareness. Knowing that changes can happen, understanding what to watch for, and feeling empowered to ask questions can shape how you navigate recovery over time. These conversations aren’t about adding worry — they’re about giving you information that helps you stay oriented and prepared.

And next week, we’ll continue that conversation with a deep dive into CAR T-cell therapy — answering the real-world questions patients and care partners ask most, with guidance from leading experts who work with CAR T every day.

Until next time —

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