Navigating Career Success and Love in the Face of Cancer
- Musician Jon Batiste’s latest GRAMMY win is especially meaningful with wife Suleika Jaouad, 37, by his side—the same partner he supported through two leukemia battles since their teenage years. She was diagnosed with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS).
- Jaouad’s relapse with leukemia in 2021 overlapped with Batiste’s career success when he was up for 11 GRAMMY nominations on the same day she began chemotherapy, a moment Batiste described as “Life intervened.” Now in remission, Jaouad says occasionally chemotherapy remains a possibility.
- Acute myeloid leukemia (AML) is a rare but aggressive cancer that affects the bone marrow—the body’s blood cell factory.
- Symptoms of AML often stem from abnormal levels of red and white blood cells—both of which are produced in the bone marrow. When these cells aren’t functioning properly, patients may experience fatigue, shortness of breath, and frequent infections due to low oxygen levels and a weakened immune system.
- Dr. Mikkael Sekeres explains that in AML, as cancer grows in a confined space in the bone marrow, the normal cells in this space that produce red blood cells, white blood cells, and platelets begin to die off. This leads to the bone marrow being filled with cancer cells.
- “For all patients of AML who have a relapse of their disease, we know that the only curative option is a bone marrow or stem cell transplant,” Dr. Tara Lin explains. “A stem cell transplant works best when patients are in remission. So the first goal when someone is in relapse is to get them back into remission.”
- Myelodysplastic syndrome is a variety of bone marrow disorders that look similar. Under a microscope, the bone marrow cells look like cancer and, genetically, may have alterations that are known to cause MDS.
- Symptoms of MDS include frequent infections, fatigue, shortness of breath (anemia), or easy bleeding/bruising. These symptoms result from the bone marrow being unable to produce enough healthy, functional blood cells.
On the IMO Podcast, the couple revisited the origins of their relationship, tracing it back to a chance encounter on a New York City subway when they were teenagers.
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She remembered turning to her friend and saying, “I know that guy… that’s the man I’m going to marry someday.”
Their connection deepened over the years, and they married in February 2022. But before their wedding, Jaouad faced a dual diagnosis of acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS), two serious blood cancers rooted in bone marrow dysfunction.
WATCH: Better Understanding Acute Myeloid Leukemia.
AML is a rare, fast-moving cancer that disrupts the bone marrow—the body’s blood-producing center.
In AML, as cancer grows in a confined space in the bone marrow, the normal cells in this space that produce red blood cells, white blood cells, and platelets begin to die off. This leads to the bone marrow being filled with cancer cells.
“The bone marrow is the factory that makes all of the cells that wind up in our bloodstream,” explained Dr. Mikkael Sekeres, chief of hematology at Sylvester Comprehensive Cancer Center at the University of Miami Health System.
“When a person has a cancer of the bone marrow, such as acute myeloid leukemia or myelodysplastic syndromes, that factory gets broken,” Dr. Sekeres added.
“Cancers grow, and they grow in an uncontrollable way,” Dr. Sekeres added.
AML symptoms often arise when abnormal blood cell levels interfere with oxygen delivery and immune function, leading to fatigue, infections, and shortness of breath.
WATCH: What is Myelodysplastic Syndrome (MDS)?
Jaouad’s other diagnosis, myelodysplastic syndrome, is also a type of blood cancer. It occurs when a dysfunction in the bone marrow produces defective blood cells, which contribute to low blood counts.
Her relapse collided with Batiste’s rising success—most strikingly in November 2021, when he received 11 GRAMMY nominations on the same day she began chemotherapy. As Batiste put it, “Life intervened.”
Jaouad has been candid about the emotional complexity of that period.
“Too often, we see a glossed-over version of the illness narrative… A relapse is every cancer patient’s worst nightmare,” she said to Vanity Fair, explaining why she felt compelled to document the experience “from the trenches of treatment.”
That honesty shaped “American Symphony,” the documentary chronicling Batiste’s creative ascent alongside Jaouad’s fight for her life. Director Matthew Heineman emphasized that she was never meant to be “the sick antidote to Jon’s success,” but a fully realized artist whose story stood on its own.
Batiste echoed that sentiment, noting that the film’s vulnerability came from capturing “Suleika having this seismic diagnosis and me having these seismic career milestones.”
Jaouad ultimately reached remission, though she will likely need periodic chemotherapy for the rest of her life. Through it all, their bond—first sparked on a subway car—has only grown stronger.
Expert Resources on Acute Myeloid Leukemia
- Acute Myeloid Leukemia (AML) — What Are The Symptoms?
- Acute Myeloid Leukemia (AML): How Do I Make Treatment Decisions?
- Advancements in Treating Acute Myeloid Leukemia (AML)
- Acute Myeloid Leukemia (AML): Treatment Options After Relapse
- After an AML Diagnosis, Knowing Your Risk Group is Important for Treatment
Understanding Acute Myeloid Leukemia Diagnosis
Acute myeloid leukemia (AML) is an aggressive form of blood cancer that starts in the bone marrow—the body’s blood cell factory. This is where stem cells develop into three essential types of blood cells:
- White Blood Cells (WBCs): Defend the body against infection.
- Red Blood Cells (RBCs): Carry oxygen to tissues and organs.
- Platelets: Help blood clot and prevent excessive bleeding.
Inside the bone marrow, stem cells mature into specialized cells through a process of self-renewal and differentiation. Myeloid progenitor cells are responsible for producing RBCs, platelets, and granulocytes (a type of WBC). In AML, this process breaks down.
AML specifically targets myeloblasts—immature cells that should develop into healthy blood cells. Instead, these myeloblasts fail to mature and begin to accumulate in the bone marrow and bloodstream. As a result, the body is left with dangerously low levels of functioning red cells, white cells, and platelets.
According to the National Comprehensive Cancer Network (NCCN), a diagnosis of AML typically requires that 20% or more of the cells in the blood or bone marrow are myeloblasts. However, in some cases, AML can be diagnosed with a lower percentage if certain genetic markers or abnormalities are present.
What to Expect During a Stem Cell Transplant
During a stem cell transplant, patients receive healthy donor cells through an IV infusion—similar to a blood transfusion. The IV drips donor bone marrow into the AML patient’s system, allowing it to enter the body through the bloodstream. These new cells travel through the bloodstream and begin the process of rebuilding the patient’s bone marrow. Most patients remain in the hospital for two to four weeks after the procedure so their care team can closely monitor how the new marrow is developing.
Side effects during this period can include extreme fatigue, nausea, and a weakened immune system. That’s where the medical team steps in to provide critical support.
“What we see on daily blood tests is that the patient’s bone marrow is shutting down,” explains Dr. Costello.
“Their immune system weakens, their body stops producing the blood cells it needs—the literal gas in their tank. That’s when we step in to keep them safe. We can give blood and platelet transfusions to keep that tank full,” Dr. Costello continued.
In addition to transfusions, patients also receive protective antibiotics to guard against infection while their immune system is at its most vulnerable and the new bone marrow begins to take hold.
How Doctors Detect Acute Myeloid Leukemia: Bone Marrow Biopsies
Symptoms of AML often stem from abnormal levels of red and white blood cells—both of which are produced in the bone marrow. When these cells aren’t functioning properly, patients may experience fatigue, shortness of breath, and frequent infections due to low oxygen levels and a weakened immune system.
To confirm a diagnosis, physicians perform a bone marrow biopsy. This procedure involves extracting both liquid marrow and a small chip of bone from the back of the hip to closely examine the cells inside.
“What we can do is actually make slides and look at cells underneath the microscope with our eyes to get a better sense of ‘are all the cells there, are the cells normal, do they look abnormal,’” explains Dr. Tara Lin, Director of the Acute Leukemia Program at the University of Kansas Medical Center.
“Then we do additional testing from there to characterize further any abnormal cells that may be present,” Dr. Lin added.
This microscopic analysis helps doctors determine whether AML is present and how advanced it may be—guiding the next steps in treatment and care.
Spotting a Relapse in Acute Myeloid Leukemia: Why Vigilance Matters
For many patients with acute myeloid leukemia, remission isn’t the end of the journey.
“Unfortunately, for many patients with AML, their disease will come back, and we call that a disease relapse,” says Dr. Lin.
“It’s really important that when a patient has a relapse of their disease, they see someone who has a lot of experience in treating AML,” Dr. Lin added.
WATCH: What Are The Symptoms of Relapse in Acute Myeloid Leukemia
Relapse symptoms can vary, but common warning signs include:
- Fatigue and shortness of breath
- Easy bruising or bleeding due to low platelet counts
- Anemia from reduced red blood cells
- Frequent infections caused by low white blood cell levels
- To catch relapse early, patients in remission are closely monitored.
“If I have a patient with AML who’s in remission, I will follow their blood counts really closely,” Dr. Lin explains. “And if I see a drop in any of those normal counts, I will be prompted to get a bone marrow biopsy to look for disease relapse—earlier rather than later, before the patient develops symptoms.”
This proactive approach helps ensure that any recurrence is identified and treated swiftly, giving patients the best chance at continued recovery.
Treatment Options After Experiencing a Relapse
When acute myeloid leukemia (AML) returns, there’s no one-size-fits-all approach.
“When you go to the national guidelines for AML and relapse, there is no one standard of care,” Dr. Lin says.
“Very often we will recommend that a patient consider a clinical trial to learn more about new therapies that may be more effective at the time of disease relapse,” Dr. Lin continued.
- Standard Therapies
- For patients opting for traditional treatment, oncologists may recommend a different chemotherapy regimen than what was used during initial diagnosis.
- “Several different chemotherapy regimens use different combinations of drugs,” Dr. Lin explains, “and they may be different from what the patient received the first time.”
- Relapse After Long-Term Remission
- If a patient has been in remission for 18 months or longer, doctors may revisit the original induction therapy.
- “We will very often go back to their original regimen to try to get them back into remission,” Dr. Lin says.
- Relapse After Short-Term Remission
- For patients whose remission lasted only a short time, a new strategy is needed. “We will not go back to the treatments they’ve already had,” Dr. Lin notes.
- “We try to come up with something different so we can target the leukemia in a whole new way.”
- The Curative Option: Stem Cell Transplant
- Regardless of the relapse scenario, one goal remains clear: remission.
- “For all patients of AML who have a relapse of their disease, we know that the only curative option is a bone marrow or stem cell transplant,” Dr. Lin explains. “A stem cell transplant works best when patients are in remission. So the first goal when someone is in relapse is to get them back into remission.
A Deeper Look Into the Reengineering Process
Doctors reengineer a patient’s immune system with CAR T-cell therapy by first drawing blood and separating out the T-cells.
Then, using a harmless virus, the T-cells are genetically engineered to produce proteins called chimeric antigen receptors (CARs) on their surface. These receptors enable the cells to recognize and attach to a matching protein, called an antigen, on the tumor cell, just as a key fits into a lock. The process primes the T-cell to recognize the cancer and to fight it.
Next, the modified cells are multiplied into the millions in a laboratory.
WATCH: CAR T-Cell Therapy: How it Works, and Who Can Get It
The CAR T-cells are specific to your cancer. For example, some types of lymphoma cells have the antigen CD19 on their surface. CAR T-cell therapies for those cancer types only target the CD19 antigen.
A few days before the infusion, you’ll get chemotherapy to clear out some of your immune cells and prime your body to receive the CAR T-cells. This will help the CAR T-cells work better.
Finally, the modified T-cells will be infused back into your body to hunt down the cancer.
Several FDA-approved CAR T-cell therapies are currently in use, including:
- Abecma (idecabtagene vicleucel)
- Breyanzi (lisocabtagene maraleucel)
- Carvykti (ciltacabtagene autoleucel)
- Kymriah (tisagenlecleucel)
- Tecartus (brexucabtagene autoleucel)
- Yescarta (axicabtagene ciloleucel)
These therapies are used to treat various blood cancers, such as certain leukemias, lymphomas, and, more recently, multiple myeloma.
What’s the Effectiveness of CAR T-cell Therapy?
CAR T-cell therapy has delivered promising outcomes for patients with certain blood cancers, showing response rates as high as 80% in cases where other treatments have failed. For individuals with lymphoma, more than 54% of those treated with the FDA-approved therapy axicabtagene ciloleucel (Yescarta) and 40% of those who received tisagenlecleucel (Kymriah) achieved a complete response, meaning no detectable cancer remained.
Remarkably, among those treated with Yescarta, 40% remained in remission an average of 15 months following their infusion.
Typically, patients who receive CAR T-cell therapy have already had at least two previous treatments, often including rituximab (Rituxan) with chemotherapy and high-dose chemotherapy.
“Some of these patients had three, four, or five prior lines of therapy, and we were able to save their lives,” said Dr. Stephen Schuster, director of the Abramson Cancer Center’s lymphoma program, in an interview with SurvivorNet.
Medical research has shown response rates of between 80 and 100 percent. “It’s really unprecedented. This is something we had never seen before for patients who have had six or seven prior lines of therapy,” says Dr. Nina Shah, a hematologist with the University of California, San Francisco Medical Center.
CAR T-Cell Therapy Side Effects
CAR T-cell therapy is a form of cancer treatment that differs from traditional chemotherapy in a significant way: it generally doesn’t cause hair loss or nausea. But like any powerful treatment, it comes with its own set of side effects.
As CAR T-cells multiply in the body, they release inflammatory proteins called cytokines. This can trigger a condition known as cytokine release syndrome (CRS), which may cause symptoms like high fever, weakness, chills, and low blood pressure. Another potential side effect involves neurological changes, which can lead to confusion or a decreased sense of awareness.
WATCH: CAR T-Cell Therapy Side Effects
When side effects do appear, the most common and least severe is fatigue.
“That’s very normal, and it usually resolves in the first month,” says hematologist Dr. Nina Shah.
However, CRS can sometimes be more serious. It occurs when the therapy causes a surge of cytokines—tiny immune-signaling proteins—to flood the bloodstream. This response can bring on a range of symptoms, from mild flu-like effects to more severe reactions.
Typical CRS symptoms include headache, fever, chills, scratchy throat, nausea, vomiting, diarrhea, joint or muscle pain, and extreme fatigue. In more serious cases, it can cause shortness of breath, low blood pressure, or a rapid heart rate. While most patients experience only mild to moderate reactions, it’s important to note that CRS can, in rare instances, become life-threatening.
Currently, scientists aren’t sure whether the side effects correlate with how well the treatment is working, so it’s difficult to tell patients whether their side effects or lack of them are a good or bad thing. “All I can say is that every patient is different, and every patient has a different course,” says Dr. Shah.
Data shows that the quality of life for people who have undergone CAR T-cell therapy “actually improves when we talk about pain, fatigue, and emotional and social functioning. And so, whether or not you experience side effects, we hope that this therapy will improve your quality of life,” says Dr. Shah.
If you’re considering CAR T-cell therapy, talk with your doctor about all potential side effects—the mild, the serious, and everything in between.
Treatment doesn’t end once you’ve received the CAR T-cell infusion. “They typically have to be monitored very carefully after that for a number of weeks or even months, due to some of the potential side effects,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center, tells SurvivorNet.
Understanding Myelodysplastic Syndrome and How It’s Treated
Myelodysplastic syndrome is a variety of bone marrow disorders that look like each other, meaning under a microscope, the bone marrow cells look like cancer and genetically may have alterations that are known to cause MDS. Common symptoms of MDS may include frequent infections, fatigue, shortness of breath (anemia), or easy bleeding/bruising. These symptoms occur because of the bone marrow’s inability to produce enough healthy, functional blood cells.
WATCH: Living with MDS
Some patients with MDS will have their cancer evolve into acute myelogenous leukemia (AML). Thus, your doctor needs to monitor your risk. They can monitor the risk by looking at your blood counts, the amount of cancer in the bone marrow, and any genetic abnormalities.
“For the workup of MDS, you start with a regular blood check, and you confirm that someone has low blood cells,” Dr. Jun Choi, a hematologist/oncologist at NYU Langone’s Perlmutter Cancer Center, tells SurvivorNet.
“And then, when the suspicion for MDS is high, the ultimate gold standard diagnostic test is a bone marrow biopsy. And that is because the bone marrow is where all the blood cells are made. And we want to confirm that there are abnormal cells in the bone marrow.”
A bone marrow biopsy can confirm MDS. It can also provide other details on your cancer.
WATCH: Treating MDS
Treating MDS
MDS patients’ treatment options depend on symptoms and the risk of it evolving into AML.
For lower-risk MDS:
- Many people may only need to monitor blood counts every few months without specific treatment.
- Some people may be started on medications to stimulate RBC or platelet production.
- Some people may need a blood transfusion every few months.
- Specific types of MDS may benefit from lenalidomide (Revlimid), luspatercept (Reblozyl), or immunosuppressing medications.
For higher-risk MDS:
- Treatment usually starts with a class of drugs known as hypomethylating agents (HMAs). HMAs include intravenous or oral forms of azacitidine (Vidayza, Onureg) or decitabine (Dacogen, Inqovi).
- Other treatments are possible depending on the presence of certain mutations or if the disease is more aggressive.
- Some patients may require more frequent transfusions, from every few weeks to even several times a week.
- Some patients may be eligible for a bone marrow transplant.
- Many patients should consider enrolling in a clinical trial if available.
“The only curative option [for] MDS these days is a bone marrow transplant,” Dr. Choi says.
“Now, bone marrow transplant is one of the more intense therapies for MDS, so you really want to be able to tolerate this therapy. That is why this therapy is reserved mostly for younger patients and those who do not have other medical conditions,” Dr. Choi adds.
Questions to Ask Your Doctor
- Am I a candidate for CAR T-cell therapy?
- What are the potential risks and side effects?
- What are the chances of success for my specific cancer type?
- What does the treatment process involve?
- Where will I receive treatment, and how often?
- Are there alternative treatments I should consider?
- What is the cost, and will my insurance cover it?
- What experience does this center have with CAR T-cell therapy?
- What kind of follow-up care will I need?
- Can I speak with other patients who’ve undergone this therapy?
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