Your Health After Autologous 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.

In today’s episode — our final Deep Dive of Season One — we’re focusing on your health after an autologous stem cell transplant, or a transplant using your own stem cells. We’ll explore what recovery typically looks like in the months and years that follow, what late effects are possible, and how patients and care partners can think about long-term monitoring, prevention, and quality of life after treatment.

But before we get there, we’ll take a quick look at a recent headline exploring how artificial intelligence is beginning to reshape parts of medical care — and what that may mean for doctors and patients.

Let’s get started.
 

A Few Updates

What A.I. Means for Medicine — and for Patients

For this week's news update, we're looking at a recent article from The New York Times exploring a question that's beginning to surface more often in medicine: as artificial intelligence becomes more capable, what is the role of the physician? It’s a question with real relevance for anyone navigating multiple specialists, complex treatment plans, or long-term follow-up.

The article describes how some A.I. tools are already performing specific tasks very well: interpreting scans, identifying patterns in electrocardiograms, drafting documentation, answering patient questions in portals, and helping triage which patients need to be seen urgently.

That kind of progress is prompting many physicians to think carefully about what parts of medicine are uniquely human. Some doctors interviewed in the article describe the moment as "existentially threatening," not because A.I. replaces medicine outright, but because it forces a deeper question about where human judgment matters most.

Experts quoted in the piece note that A.I. excels at pattern recognition and processing enormous amounts of data. But it struggles with ambiguity, with incomplete information, nuanced communication, and the subtle cues that help a physician determine when a patient's symptoms signal something serious. One neurologist describes how a single word like "dizzy" can mean very different things depending on context, the kind of interpretation that still depends on years of clinical training and a doctor who knows how to listen.

The article also highlights both opportunity and concern. A.I. may reduce administrative burdens, shorten wait times, and help triage patients so specialists can focus on more complex cases. But A.I. systems can also replicate existing biases in healthcare, and some critics warn that the technology could be used to optimize efficiency or profits rather than genuinely improve patient care.

For patients navigating transplant, CAR T-cell therapy, or long-term survivorship, the human side of medicine isn't going anywhere. Judgment, communication, and trust remain central. What may change is how your care team uses new tools to support the work they're already doing.

For anyone dealing with a serious illness, the relationship with your doctor matters enormously, and nothing in this article suggests that's changing. If you'd like to read more we'll include a link to the full article in the show notes.

A Quick Note

Before we move on, just a quick note.

If Thrive! has been helpful to you this season, one of the simplest ways to support the show, and help others find these conversations, is by following or subscribing on your favorite podcast platform or on YouTube, and sharing an episode with someone who might benefit.

Between episodes, you can stay connected through BMT InfoNet’s newsletter, YouTube channel, and social media communities — including Facebook and Instagram for patients and care partners, and LinkedIn, X, and Bluesky for professional updates. All of those links are in the show notes. And if you ever need to reach us directly, you can email us at thrive@bmtinfonet.org.

Something That May Help

Sometimes what helps most isn’t another appointment or another article online. It’s having clear, reliable information you can return to — at your own pace.

I want to share something that may help.

BMT InfoNet offers a collection of books written specifically for patients, survivors, and care partners navigating stem cell transplant and CAR T-cell therapy. There are books dedicated to transplants using your own stem cells, called autologous transplants, and transplants using donor cells, known as allogeneic transplants. There is also a detailed guide to CAR T-cell therapy that explains what to expect before, during, and after treatment, along with a booklet about graft-versus-host disease, a potential complication after an allogeneic transplant.

You can read them from start to finish, or turn to the sections that match the questions you’re facing right now. Many people share them with family members or friends who want to better understand what this experience really involves. In fact, some patients have told us they consider these books their transplant “bibles” — resources that  they return to again and again.

Some are available as free downloads, and all can be ordered in print. Every title is also available in Spanish.

If you’d like to explore the full collection, you’ll find a link in the show notes. You can also visit bmtinfonet.org and look under “Books” in the Products tab to learn more.

Deep Dive - Late Effects Following Autologous Transplant

Three months after her autologous transplant, Emily feels like herself again. Her energy has returned. She’s back to her normal routines. Most days, transplant feels like something she survived — not something she’s still inside.

As she walks away from the mailbox at the end of the driveway, flipping through the stack in her hands, she sees it. An envelope from the transplant clinic. A reminder about upcoming bloodwork. Imaging. A follow-up visit to confirm she remains in remission.

Nothing unexpected. This was always part of the plan. But her breath catches anyway. She had imagined that finishing transplant would feel like crossing a finish line. And in many ways, it did.

But this … the monitoring, the anticipating, the stretch of days before results come back … and ongoing worry about new health issues … this is part of recovery too.

Recovery isn’t over. It’s still unfolding.

HOST INTRODUCTION 

Today, we’re talking about what that unfolding recovery can look like after an autologous stem cell transplant.

An autologous transplant—using your own stem cells—is most commonly performed for people with multiple myeloma and certain types of lymphoma. And while the transplant itself may be completed in a matter of weeks, recovery continues long after blood counts return to normal.

To guide us through what’s typical—and what deserves attention—we’re turning to Dr. Alfred Garfall, Director of the Autologous Stem Cell Transplant Program at the Hospital of the University of Pennsylvania.

In his presentation for BMT InfoNet’s 2023 Survivorship Symposium, Dr. Garfall walks through the phases of recovery, the way the immune system rebuilds over time, and the kinds of health issues that can emerge months or even years later. He also emphasizes something important: while there are potential late effects, the vast majority of patients return to their prior quality of life after transplant.

So today, we’ll explore what that long-term picture really looks like—what’s common, what’s manageable, and how to think about your health in the years ahead.

SEGMENT 1:  Understanding Autologous Transplant

To understand what long-term recovery looks like, it helps to start with what an autologous transplant actually is. Because despite the name, the transplant itself is not the main therapy.

Dr. Garfall
“It’s the chemotherapy that is the center of the therapy when we’re talking about an autologous stem cell transplant. Really the autologous stem cell transplant—which entails the removing of stem cells from your body before the chemotherapy and the re-infusion of them afterwards—the purpose of that stem cell transplant is to help the bone marrow recover from the effects of the high-dose chemotherapy. So really the transplant is just a way to make it reasonably safe to give really high doses of the chemotherapy. And it’s the chemotherapy that we think is doing the therapeutic work of the transplant, killing the residual myeloma of lymphoma cells that are still in the patient after they’ve completed their standard therapy.”

Before treatment begins, stem cells are collected from your own body. Then high-dose chemotherapy is given—strong enough to destroy cancer cells, but also strong enough to wipe out the bone marrow’s ability to produce healthy blood cells.

Without those stored stem cells, blood counts wouldn’t recover.

So after chemotherapy is completed, the stem cells are infused back into the bloodstream. They find their way to the bone marrow and begin rebuilding it from the inside out.

Most autologous transplants are performed for people with multiple myeloma or certain types of lymphoma. In multiple myeloma, the goal is long-term disease control. In lymphoma, the goal is cure—although relapse can still occur in some patients.

And while the most intense phase of transplant may only last a few weeks, the rebuilding process continues long after that initial hospital stay.

SEGMENT 2: Early Recovery—The First Weeks to 3 Months

After stem cells are re-infused, recovery moves into its first active phase.

Dr. Garfall
“After the stem cells are re-infused, there’s a period of time in the hospital for a couple weeks when the blood counts are going down and coming back up, and that’s where some of the early side effects and toxicities of transplant come into play.”

The high-dose chemotherapy has done its work, but it has also temporarily wiped out the bone marrow’s ability to produce healthy cells. As the stored stem cells take root and begin rebuilding the marrow, the focus is on monitoring and support.

In this early phase, side effects are usually related to chemotherapy. Gastrointestinal problems are common—nausea, diarrhea, difficulty eating or drinking comfortably. Dehydration can occur. Fatigue can feel profound. Infections are watched for closely.

The immune system is at its weakest in these first weeks.

Dr. Garfall
“The immune system gradually recovers over a period of years after an autologous stem cell transplant, and the period where it’s weakest is in the early couple months after the transplant.”

Blood counts may recover within weeks. But immune recovery takes longer—often much longer.

Energy also returns gradually.

Dr. Garfall
“Chemotherapy does just ‘knock the wind out of your sails.’ The period of the most fatigue is in those couple of weeks after the chemotherapy, but really it’s a gradual process over a couple of months that you fully recover your energy. We expect most patients, by about three months after the transplant, to have recovered back to their baseline level of energy and vigor.”

That three-month mark is an average, not a guarantee. Some people recover more quickly. Others need more time. But for most patients, this early phase gives way to steadier footing. Blood counts stabilize. Appetite improves. Strength returns in increments.

And that’s when the next stage of recovery begins.

SEGMENT 3: The Immune System Rebuilds

As blood counts recover and patients leave the hospital, the focus shifts from acute side effects to protecting the immune system over the long term.

In the earliest weeks after transplant, infection prevention is proactive. Preventative antibiotics are commonly used, and fevers are treated aggressively. The goal is to prevent minor infections from becoming serious while the immune system is still fragile.

But even after blood counts normalize, immune recovery continues.

Dr. Garfall
“After a patient’s blood counts have recovered, starting a couple of months after the transplant, we start thinking about long-term prevention of infection; vaccination is an important part of that.”

A series of vaccines is recommended after an autologous transplant. While specific schedules can vary between centers, the goal is the same: to rebuild protection against common infections.

Dr. Garfall
“In addition, we recommend vaccination against shingles. There is a shingles vaccine called Shingrix® that has been specifically studied in patients who have had autologous stem cell transplants, which has been shown to be highly effective in reducing the risk of shingles after a transplant. That’s a two-dose vaccine. We recommend avoiding the alternative shingles vaccine called Zostavax, which is a live vaccine. It is worth just keeping in mind that there are two out there, and the one that you want to get after an autologous stem cell transplant is the Shingrix® one.”

COVID vaccination is also revisited after transplant, and guidance may evolve over time. Patients are encouraged to follow current recommendations from their transplant team and national health agencies.

For a small number of patients whose immune systems recover more slowly, additional support may be needed. Intravenous immune globulin—IVIG—can be used in cases of recurrent infections, though this is uncommon after an autologous transplant.

The key distinction is this: blood counts may recover in weeks. Immune strength rebuilds over months and years. And protecting that recovery becomes part of long-term survivorship.

SEGMENT 4: Returning to Routine Healthcare

As recovery stabilizes, another shift happens.

For many patients, the year leading up to transplant has been defined by cancer treatment. Appointments are frequent. The focus is narrow. The priority is clear.

But once the transplant phase is complete and the disease is under control, the lens widens again. At this point, Dr. Garfall encourages patients to reconnect with their primary care providers and resume routine preventive care. That includes mammograms, colonoscopies, skin exams, dental visits, and routine checks of cholesterol, blood sugar, and blood pressure.

These screenings may have been postponed during treatment, but returning to them is an important part of long-term health after transplant. Together, they form the foundation of long-term survivorship.

Transplant may have been the most intense chapter. Ongoing health maintenance is what helps sustain recovery in the years that follow.

SEGMENT 5: Late Effects to Watch For

Dr. Garfall
“We expect most patients, the vast majority of patients, to get back to their prior quality of life after an autologous stem cell transplant.”

Most people recover well. But long-term follow-up reveals patterns that are worth understanding. When patients were surveyed five years after transplant, a number of common issues emerged.

Dr. Garfall
“If you ask a patient after a transplant, five years after an autologous transplant what are some of the common problems they report are common symptomatic and health problems, this is a list of problems that more than ten percent of patients in this survey reported: sexual dysfunction, shingles, cataracts, osteoporosis or osteopenia, needing a joint replacement, and skin cancer.”

Some of these conditions are common in the general population, particularly among people in their 60s and 70s. But transplant and prior cancer therapy may increase risk. Bone health is one example — Dr. Garfall recommends maintaining adequate calcium and vitamin D, through diet or supplements, and following your primary care doctor's guidelines for bone density screening.

There are also organ-specific complications that can occur. Certain lung conditions can develop after transplant. One, called idiopathic pulmonary syndrome, is rare and typically occurs within the first few months. In lymphoma patients who received chemotherapy regimens containing BCNU, inflammation of the lungs can occur within the first three months. Most cases are treatable, often with steroids, and many patients recover.

Cardiovascular issues are another area of attention, particularly for lymphoma patients who previously received doxorubicin as part of their initial treatment. That medication is associated with a long-term risk of heart failure. While heart failure can sound alarming, many cases are mild and manageable with medication. Ongoing monitoring is important.

Second cancers are also discussed in long-term follow-up. It can be difficult to separate what is caused by the transplant itself from prior chemotherapy or maintenance therapy. In multiple myeloma patients receiving Revlimid® maintenance, there appears to be a small increased risk of secondary cancers. However, long-term clinical trials show that maintenance therapy improves overall survival, and for most patients, that benefit outweighs the added risk.

Beyond specific organs and conditions, Dr. Garfall raises a broader idea — one that helps explain why some survivors experience increased infections or develop autoimmune problems long after treatment has ended.

Dr. Garfall
“There’s an increasing appreciation of a concept called ‘immune health’ which is the health of the immune system. And we think of the immune system as being really important in fighting disease, but it also has a role in fighting cancer. And dysregulation of the immune system also is the cause of auto-immune disease. In terms of looking at immune health long  after a transplant … If you look at patients who are long-term lymphoma survivors, you do see some deficiencies in immune health that’s reflected in an increased risk of infection and autoimmune disease, even long after the disease has been cured.”

In many cases, it’s difficult to disentangle what comes from the transplant itself, what stems from prior cancer therapy, and what may be related to the underlying disease.

Late effects are possible. But they are monitored. And when identified early, many are manageable. Understanding what can happen does not mean expecting it to happen. It simply means staying engaged in long-term care.

SEGMENT 6: Sexual Health and Fertility

Dr. Garfall
“Sexual health is one of the more common things that patients report problems with following transplant. Both men and women report less sexual activity after transplant than would be expected for their age. Reported reasons for lower sexual activity among patients include reduced sexual function; erectile dysfunction for men or vaginal dryness for women, and/or overall reduced interest.”

These changes can feel personal. But they are not unusual.

For men, erectile dysfunction can often be treated with medications such as sildenafil. For women, vaginal dryness may improve with topical estrogen prescribed by a primary care physician or gynecologist.

Fertility is another area of concern, especially for younger patients.

Most female patients will be postmenopausal after an autologous stem cell transplant. Recovery of fertility depends on age and prior therapy, and while some younger women do regain ovarian function, it is not guaranteed.

Importantly, the absence of regular periods does not necessarily mean infertility. Contraception should still be considered if pregnancy is not desired. And for patients who wish to become pregnant after transplant, consultation with an OB/GYN before attempting pregnancy is recommended.

Sexual function and fertility are rarely the first topics discussed during treatment. But they remain part of long-term health—and they deserve attention.

SEGMENT 7: Symptoms That Can Linger

For many patients, energy returns gradually in the first few months after transplant. But not everyone follows the average timeline. Some symptoms can linger.

Fatigue is one of the most common.

While most patients return to baseline energy by about three months, some continue to struggle. Dr. Garfall acknowledges that not everyone fits the average. For multiple myeloma patients on maintenance therapy, medications such as Revlimid® may contribute to ongoing fatigue. In some cases, a temporary break from maintenance can help clarify whether it is playing a role.

Thyroid function is another factor worth checking. About ten percent of patients develop some degree of thyroid dysfunction after autologous transplant, and an underactive thyroid can cause fatigue that closely mimics or adds to the fatigue patients already attribute to treatment. Dr. Garfall recommends checking thyroid hormone levels, especially in patients reporting persistent fatigue, because when a thyroid problem is the cause, it can often be effectively treated.

He also notes that certain medications, including methylphenidate, have been studied for cancer-related fatigue and may help selected patients.

Dr. Garfall
“Other problems, such as fatigue, depression/anxiety, and cognitive dysfunction, are all problems in cancer patients and should be monitored and attended to.”

Peripheral neuropathy is another symptom that can linger.

Dr. Garfall
“Peripheral neuropathy, this doesn’t usually come from the transplant so much as the prior therapy the patients will have received for the myeloma and lymphoma before the transplant. But it can be made a little bit worse after the transplant.”

Medications used to treat multiple myeloma and lymphoma — such as bortezomib or brentuximab — can cause numbness, tingling, or burning sensations in the hands and feet. In some cases, symptoms improve with time. In others, they may persist. Treatment options are available.

Dr. Garfall
“Gabapentin is often prescribed to deal with peripheral neuropathy. I would encourage everybody to think about another medication called duloxetine, which also goes by the brand name Cymbalta. (It may be the answer) as a first-line agent for patients with neuropathy and can be very effective.”

These symptoms are not a sign of weakness. And they are not uncommon. Like other late effects, they deserve to be discussed openly with your oncologist, transplant team, or primary care physician so that support can be offered when needed.

SEGMENT 8: Multiple Myeloma–Specific Long-Term Considerations

For patients with multiple myeloma, long-term recovery includes another layer of complexity.

Dr. Garfall
“When we implement an autologous transplant for multiple myeloma, we recognize that most patients are not going to be cured of the myeloma. Our hope is to put the disease into a long period of disease control.”

The goal is to reduce the amount of disease as much as possible and extend the time before additional therapy is needed. For many patients, that period of control is supported by maintenance therapy—most commonly lenalidomide, also known as Revlimid®.

Questions often arise about how long maintenance should continue. Clinical trial data suggest that continuing therapy beyond two years may improve disease control, but the ideal duration is still uncertain. In practice, decisions are individualized.

If side effects are significant and affect quality of life, stopping maintenance after a sustained period of treatment may be reasonable. If side effects are mild and manageable, continuing longer may offer benefit. It remains an area of ongoing study.

Quality of life in myeloma patients often improves after transplant and remains stable during disease control. When the myeloma begins to grow again, quality of life may decline—reflecting the impact of the disease itself.
For multiple myeloma patients, then, long-term recovery is not just about rebuilding from transplant. It also includes ongoing monitoring, thoughtful decisions about maintenance therapy, and attention to overall health habits that may support disease control over time.

OUTRO

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

Autologous transplant is not just a procedure. It’s a process.

The chemotherapy does the therapeutic work. The stem cells help your body recover from it. And while blood counts may rebound within weeks, full recovery unfolds over months and years.

There may be lingering symptoms. There may be screenings to resume, vaccines to receive, medications to adjust, or conversations to have about sexual health, fatigue, mood, or maintenance therapy.

For patients with multiple myeloma, transplant is often part of a longer disease journey. For patients with lymphoma, it may be part of a curative strategy. In both cases, the goal is sustained health in the years that follow.

Dr. Garfall
“Even though we talk a lot about late complications, most patients return to their prior quality of life following autologous stem cell transplant.”

Recovery after transplant doesn’t simply stop. It continues — gradually, deliberately, and often successfully.

One Last Thought

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

When treatment ends, it’s easy to imagine that recovery will feel like a finish line — a clear shift back into the life you had before.

But for many people, recovery after an autologous transplant doesn’t unfold that way. It’s less about one defining moment and more about steady rebuilding.

There may be follow-up appointments that stretch into years. There may be small changes in energy, in focus, in how your body feels. There may be new routines — vaccines, screenings, maintenance therapy, conversations with specialists — that become part of your normal.

None of that means something is wrong. It means you’re living in the long arc of survivorship.

And as we close out this first season of Thrive!, I hope these conversations have helped you feel a little more prepared for that long arc — and a little more supported within it.

What matters most is staying connected — to your care team, to your primary care provider, to the signals your body gives you, and to the questions that come up along the way.

And you don’t have to navigate that alone.

Until next time —

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