An Odyssey of Symptoms, Setbacks, Treatments, and a Cure With CAR T-Cell Therapy

Laurie Adami was a 43-year-old frequent flier and software company president when an odd mix of symptoms came out of nowhere. More than 10 doctors dismissed her complaints, offering explanations for the sinus infections, the enlarged neck gland, the swollen abdomen, the dry eyes, and the debilitating fatigue.

It was allergies (she tested negative).

Maybe the lump was a pregnancy-related hernia (her son was now 3).

The fatigue? Her busy schedule was to blame, even motherhood.

It took 3 years and research on Adami’s part, which led to a growing suspicion of lymphoma, before a physician she met through her professional network ordered imaging. The scans showed a tumor “the size of a small watermelon.”¹ Adami, now with a 6-year-old, had follicular lymphoma (FL), and might have had it as long as a decade, based on her personal account published this week in Future Oncology, with support from Kite Pharma.¹

Adami’s story is ultimately a hopeful one. In 2018, her life was saved following enrollment in ZUMA-5 (NCT03105336), a trial for the chimeric antigen receptor (CAR) T-cell therapy axicabtagene ciloleucel, or axi-cel (Yescarta; Kite/Gilead).² But for 12 years, she lived in a cycle familiar to many patients with FL: treatment, relapse, repeat.

After 6 therapies, with about 8 pounds of tumor pressing on her kidney, the infusion of axi-cel seemed “anti-climactic.” One month later, her PET-CT scan was clean. Eight years later, she remains cancer-free and is considered cured.¹

Getting to that point was not easy.

“Each step of her diagnostic journey resulted in delays; doctors were dismissive of her symptoms, biopsy findings were often inaccurate and required additional review, and medical practitioners were often difficult to reach for more information,” the article states. “Though Laurie found that developing personal relationships with nurses or nurse practitioners helped expedite obtaining results and responses to her queries, many patients struggle or face uncertainty in how best to develop these connections.”¹

Along the way, she lost a lot. Adami had to give up a career she loved, and the income that went with it. Living with FL for more than a decade—and coming close to death from kidney failure—affected the entire family.

The article states, “From the time that Laurie’s son was in kindergarten until after he graduated from high school and Laurie achieved complete remission, her son feared that she was going to die. Laurie’s husband also feared losing his spouse.”

Today, 20 years after her diagnosis, Adami is an advocate who argues that too few patients who should be candidates for CAR T are ending up where she did.

Many support her position that CAR T reaches only 75% to 80% of eligible candidates. Last year, the coalition CAR T Vision wrote in Evidence-Based Oncology™ that only 2 in 10 eligible patients receives CAR T-cell therapy, as it launched a campaign to double the number of patients receiving therapy by 2030.³ Reimbursement, travel barriers, and a lack of authorized treatment centers are all culprits.^1,3

Long Search for a Diagnosis Is Common

Adami’s experience of having her symptoms dismissed is common. In the 2024 Global Patient Survey on Lymphomas & CLL, 49% of patients with symptoms saw a doctor 3 or more times before diagnosis.⁴ Adami notes that she was never connected with resources to help her cope with fear and uncertainty.

After first-line R-CHOP, she relapsed 4 times. She declined autologous stem cell transplant (ASCT) because of the relapse risk and the month-long hospital stay it would require while her son was in first grade. She then received vorinostat (Zolinza; Merck) in a phase 2 trial, then bendamustine plus rituximab, then 131I-tositumomab (Bexxar; GSK). Next came idelalisib (Zydelig; Gilead), which kept her disease stable for more than 5 years but triggered Crohn's disease within 7 weeks. Obinutuzumab (Gazyva; Genentech) was her sixth therapy.

The toll was heavy. Besides leaving her job after 25 years, Adami lives with effects from those earlier treatments, including neuropathy, osteoporosis, hypothyroidism, a weakened immune system, hearing loss, and a tendency to form blood clots.

The Girl Named Emily Whitehead

Adami first learned about CAR T in 2012 at a screening of Fire With Fire, the film about Emily Whitehead, the first pediatric patient to receive CAR T-cell therapy; her survival helped lay the groundwork for approval of a different treatment, tisagenleucleucel (Kymriah; Novartis).⁵

ZUMA-5 did not open to patients with FL until 2018.² In the 6 years in between, Adami read publications, attended conferences, visited treatment centers, and talked with oncologists. Axi-cel is now approved in FL after 2 or more prior lines of therapy and is being studied as a second-line treatment in ZUMA-22 (NCT05371093).⁶

Adami writes that regular progress reports from the manufacturing facility mattered to her psychologically; her earlier trials had lacked that kind of transparency. During the wait, she celebrated her son's high school graduation and had sinus surgery. Bridging therapy did little, so she started lymphodepletion with very large tumors and kidney enzymes that pointed toward kidney failure.

The infusion took about 16 minutes. Adami calls it the easiest step of her 12-year journey.

“The infusion came with a lollipop to mask the creamed-corn taste of the CAR T-cell preservative,” the article states.” She experienced some tingling in her tumors; within days, her kidney enzymes returned to normal.

“In the days and weeks that following, Laurie watched her tumors vanishing.” A PET-CT scan on August 15, 2018, showed no cancer.

In CAR T’s Early Days, Severe Toxicity

Adami expected to be in the hospital for 1 to 2 weeks and stayed 36 days. That included 3 days in the intensive care unit with grade 4 cytokine release syndrome (CRS) and about a week with severe neurotoxicity. She received only a single dose of tocilizumab because it wasn't yet clear days whether the drug would interfere with CAR T-cell expansion.

As other early CAR T patients have shared, Adami stresses that CRS management has improved since those early days. Prophylaxis is now routine, some patients receive CAR T as outpatients, with the FDA dropping dropped its Risk Evaluation and Mitigation Strategies (REMS) requirement in 2025.⁷ Within 3 to 4 months Adami felt normal, and she ran marathons in 2021 and 2022. Long-term testing shows few or no CD19 B cells, which confirms her CAR T cells are still working.

$3 Million Spent on Therapies Before CAR T

Adami rejects the idea that CAR T is too “costly” or “risky.” Her first 6 treatments cost about $3 million, billed to her insurer, far more than her "one-and-done" CAR T.

She urges community oncologists to learn which patients are eligible and how to refer them, and says that clinicians should weigh the risk of relapse against the hope that talking about curative intent can give patients.

Adami also cites research showing that for every additional 10 miles a patient lives from an ATC, the chance of receiving CAR T drops by 6.2%.⁸

“It is unfortunate that many patients who could benefit from CAR T-cell therapy are unable to receive this life-saving treatment,” the article concludes. “From Laurie’s perspective, CAR T-cell therapy feels like the best kept secret. Though the reasons for this are multifaceted, some contributors are a lack of knowledge about CAR T-cell therapy and the existence of barriers to identifying patients who are eligible for the treatment per National Comprehensive Cancer Network guidelines.”

In her view, the media should stop scaring patients. Payers must stop denying care, and referring physicians must do more to explain all the options.

“There remains a significant knowledge gap among clinicians, especially those in community settings and with HMOs and Medicare Advantage plans, and patients, resulting in many patients not receiving referrals for CAR T-cell therapy,” the article states. “Overall, Laurie’s treatment journey showcases the tremendous potential benefit of CAR T-cell therapy regarding treatment time, response outcomes, side effects, and quality of life compared with other treatments. Given that outcomes can vary among patients, it is imperative that those considering CAR T-cell therapy seek specialist input to discuss their options.”

References

1. Adami L. A patient’s experience with follicular lymphoma from diagnosis to cure: the life-changing impact of CAR T-cell therapy. Future Oncol Published online September 22, 2026. DOI:10.1080/14796694.2026.2728611
2. Neelapu SS, Chavez JC, Sehgal AR, et al. Five-year follow-up analysis of ZUMA-5: axicabtagene ciloleucel in relapsed/refractory indolent non-Hodgkin lymphoma. J Clin Oncol. 2025;43(33):3573-3577. doi: 10.1200/JCO-25-00668.
3. Sureda A, O'Neill M, O'Rourke B. It's time to reimagine reimbursement for CAR T-cell therapy. Am J Manag Care. 2025;31(Spec. No. 13):SP922-SP929. doi: 10.37765/ajmc.2025.89878. PMID: 41563070.
4. Lymphoma Coalition. 2024 Global Patient Survey on Lymphomas & CLL. November 6, 2024. Accessed September 28, 2026. https://lymphomacoalition.org/wp-content/uploads/P-101874-Lymphoma-Coalition-GPS-2024-Global-Report-FINAL-A4-1.pdf
5. Novartis receives first ever FDA approval for a CAR-T cell therapy, Kymriah(TM) (CTL019), for children and young adults with B-cell ALL that is refractory or has relapsed at least twice. News release. Novartis. August 30, 2017. Accessed September 28, 2026. https://www.novartis.com/news/media-releases/novartis-receives-first-ever-fda-approval-car-t-cell-therapy-kymriahtm-ctl019-children-and-young-adults-b-cell-all-refractory-or-has-relapsed-least-twice
6. Flinn IW, Jacobson CA, Nastoupil LJ, et al. ZUMA-22: A phase 3, randomized controlled study of axicabtagene ciloleucel (axi-cel) versus standard-of-care therapy in patients with relapsed or refractory (R/R) follicular lymphoma (FL). J Clin Oncol. 2023;41(suppl 16): TPS7579 DOI: 10.1200/JCO.2023.41.16_suppl.TPS7579
7. Orosco-Ttamina AL, Arana Yi C, Tsang M, Hilal T, Rosenthal A, Munoz J. Eliminating REMS for CAR T-cell therapies: An opportunity to improve access. Cancers (Basel). 2025;17(19):3216. doi: 10.3390/cancers17193216.
8. Chung AP, Shafrin JT, Vadgama S, et al. Inequalities in CAR T-cell therapy access for US patients with relapsed/refractory DLBCL: a SEER-Medicare data analysis. Blood Adv 2025; 9 (18): 4727–4735. doi: 10.1182/bloodadvances.2024015634