Navigating pregnancy with chronic lymphocytic leukemia

By Jessica Saenz 

Pregnancy and cancer: The differences in the emotions that can come with these experiences couldn't be starker. Allison Benezra felt them all when she was diagnosed with chronic lymphocytic leukemia (CLL) in the spring of 2020, in the second trimester of her first pregnancy.

CLL — a type of cancer of the blood and bone marrow — typically grows slowly, but it can progress more quickly in some cases, and it's not considered curable.

Alli was struggling with the emotional stress of the COVID-19 pandemic and now from a new cancer diagnosis rare in people her age. "There was no one to talk to; it was extremely isolating," says Alli. And, though there were other cases of pregnant women with CLL at Mayo Clinic, none had been treated. 

Alli's diagnosis was an unwelcome factor in her family planning. But with the guidance and support of her cancer care team at Mayo Clinic in Arizona, her feelings of isolation waned, making it possible for her to navigate not one but two pregnancies.

The diagnosis 

In March 2020, Alli and her husband, Alex, were already experiencing their first pregnancy under challenging circumstances. At 38, Alli was in a high-risk pregnancy category due to her age, and the COVID-19 pandemic had just begun. The CLL diagnosis compounded her already shaky emotional state, and she hoped there wouldn't be any more surprises. 

"The blows just kept coming," Alli recalls.

During routine testing at her obstetrician's office, Alli learned she had an abnormally high white blood cell count. Her care team referred her to a cancer center near her home in Phoenix. The care team there confirmed her CLL diagnosis. They offered Alli two options: wait until after the pregnancy to pursue a bone marrow biopsy and other testing to determine if treatment was needed (the earliest stages of CLL may not need to be treated right away) or terminate the pregnancy so the biopsy and testing could be completed sooner.

Alli was trying to process her diagnosis and reeling from all the new information. She needed a second opinion. It didn't take long for Alex to find Jose Leis, M.D., Ph.D., a hematologist at Mayo Clinic in Arizona with an interest in CLL. 

Dr. Leis explained that Alli was not a typical CLL patient. Most people diagnosed with CLL — 90% — are older than 50, and CLL is more common in men, according to the American Society of Clinical Oncology. 

After meeting with Dr. Leis, Alli began coming to terms with her diagnosis. "I knew he was going to be the person to help save my life — or at least help me figure out what was going on and put a plan in place," says Alli. 

Watchful waiting 

Dr. Leis told Alli and Alex there was time to breathe and plan. "Typically, when we hear the word leukemia, everybody says, 'Oh, my gosh, this is a medical emergency; we need to admit the patient and start them on chemotherapy.' But CLL is different," he says. 

CLL occurs when the bone marrow makes too many lymphocytes, a type of white blood cell, and it typically develops slowly. As in Alli's case, it's often discovered by accident through other testing. 

After confirming her diagnosis, Dr. Leis set out to learn more about Alli's specific type of CLL. "The genetic characteristics of CLL — chromosome abnormalities and the mutational status of the antibody genes — are the most important factors in how the disease progresses. We found that her disease had high-risk features with a high-risk chromosomal abnormality. It was also a subtype associated with more rapid disease progression," he says. 

But that didn't mean she needed treatment right away. "After evaluating her, my opinion was that she didn't meet standard criteria for starting treatment," says Dr. Leis. At the time, "I felt it was likely that she could make it through the pregnancy and did not need treatment or to terminate her pregnancy." 

Dr. Leis was right. With watchful waiting and frequent testing, Alli was able to deliver her son, Nathan, in July 2020 — at full term with few complications.

Alli had mentioned to Dr. Leis that she and Alex hoped to have another child. Dr. Leis knew how important timing would be for her subsequent pregnancy. Looking at her follow-up testing, he estimated that the time for watching and waiting was coming to an end, and Alli’s CLL would soon need treatment.

Timing treatment to ensure safety for Alli and her baby

Alli and Alex hoped to get pregnant before the need for CLL treatment became a reality. They consulted a reproductive endocrinologist about next steps.

In September 2022, before starting fertility treatment, Alli learned she was pregnant. This time, watchful waiting wasn't an option. "We waited until the last possible moment, but during her second trimester, it was clear her blood counts had fallen significantly," says Dr. Leis. "It was unlikely she could go through the whole pregnancy without some kind of intervention."

Alli needed a bone marrow biopsy so Dr. Leis could determine the stage of her CLL. But without an obstetrics and neonatology program at Mayo Clinic in Arizona, Dr. Leis sought to refer the procedure to a nearby hospital where Alli and her baby could be safely cared for in an emergency.  

Though bone marrow biopsy is considered safe for pregnant women and standard for a leukemia diagnosis, Alli was now in her second trimester, and she and Dr. Leis had trouble finding a hospital willing to perform the procedure. "I called six or seven local hematologists in different health systems, and all but one declined to do the bone marrow biopsy," says Dr. Leis. On the night before the scheduled procedure, their last hope also decided not to do it. 

With Alli feeling worse by the week and her labs showing that the cancer was progressing rapidly, Dr. Leis advocated for accommodations to perform the procedure at Mayo Clinic. He began assembling a team of experts, including Alli's high-risk perinatologist, who could look out for Alli and her baby's safety. 

The procedure was completed successfully with close collaboration and constant communication between Dr. Leis and Alli's OB. "The bone marrow showed what I suspected. There was extensive involvement of CLL cells in the bone marrow — more than 90%," says Dr. Leis. 

With a better understanding of Alli's cancer, Dr. Leis discussed potential treatment options with Alli and her husband, Alex. Due to the risk of congenital diabetes, neither chemotherapy nor targeted drug therapy could be used. However, doctors have successfully used monoclonal antibodies that target specific markers on CLL cells to treat pregnant people with other, more aggressive lymphomas.

Monoclonal antibodies help a person's immune system attack CLL cells. They have been extensively studied as a treatment for CLL. However, the treatment wouldn't be risk-free for Alli's baby — it could affect the development of the baby's immune system.

Dr. Leis moved forward cautiously. He began to treat Alli's CLL with monoclonal antibodies during the end of her second trimester. "We developed a technique of giving small amounts at the beginning to ensure Alli wasn't having reactions, then gave her four weekly doses. That dramatically affected and improved Alli's CLL," he says.

Welcoming baby Emery 

Baby Emery was born via cesarean delivery (C-section) in May 2023. "My OB lifted her and showed her to me, and she was screaming, crying and kicking. There she was — the little one who was kicking me during the biopsy," says Alli. 

As Dr. Leis had cautioned, Emery was born with B-cell aplasia, which blocks her immune system's ability to produce antibodies and fight infections. However, Emery showed improvement after just a few months of close collaboration with her pediatric team at Phoenix Children's Hospital. "We started seeing her B lymphocytes starting to come in. That means she's developing her immune system, and she'll make her own antibodies and will be able to fight off infection," says Dr. Leis.

Emery has struggled with illnesses in her first few months of life, including an ear infection and a fever, both of which led to hospital stays. But she is now making antibodies, and in December 2023, she defeated the respiratory syncytial virus (RSV) without a hospital stay.

Alli says she's still learning to cope with her diagnosis. "The most challenging part is waking up every day and dealing with the mental gymnastics that I'm living with cancer and then compartmentalizing so I can go about my day. It's the daily 'Groundhog Day.' You wake up, and it's the same scenario. Your days are different, but your insides are the same." 

But until it's time for her next round of treatment, Alli's focusing on being thankful and enjoying her children. "I know I'm on the CLL journey forever, but Dr. Leis and his team make this easier and much less scary. It's something to manage and less something to be afraid of," she says. "Getting to that place mentally has taken me three years, but I'm here now, and I have these two beautiful babies, and I have Dr. Leis and the team to thank." 

Learn more 

Learn about chronic lymphocytic leukemia and find a clinical trial at Mayo Clinic. 

Join the Blood Cancers and Disorders Support Group on Mayo Clinic Connect, an online community for patients and caregivers moderated by Mayo Clinic.

Also, read these articles: 

• "Chronic lymphocytic leukemia: Blood tests for diagnosis and treatment" 
• "CAR-T cell therapy restores hope for leukemia patient" 
• "Mayo Clinic prepares to biomanufacture a new CAR-T cell therapy for recurring B-cell blood cancers"