Laurie A., Follicular Non-Hodgkin Lymphoma, Stage 4
Symptoms:Frequent sinus infections, dry right eye, fatigue, lump in abdomenTreatments:Chemotherapy, targeted therapy, radioimmunotherapy
Laurie, a Los Angeles resident, was diagnosed with stage 4 follicularnon-Hodgkin lymphomain 2006, when she was 46. Her journey to diagnosis began years earlier with vague symptoms—frequent sinus infections, a tendency for her right eye to dry out, fatigue, and a lump in her abdomen. Multiple doctors dismissed her concerns, with one attributing the lump to a hernia. But a diagnostician ordered a CT scan, and it revealed a grapefruit-sized tumor and spots on her lungs.
Interviewed by: Nikki MurphyEdited by: Chris Sanchez
After undergoing a series of tests, including biopsies, Laurie learned she hadfollicular non-Hodgkin lymphoma, a type of cancer affecting the lymphatic system. Her initial response to the cancer diagnosis was shock, followed by depression and uncertainty about how to explain the situation to her young son and husband.
Laurie’s treatment regimen started with chemotherapy and amonoclonal antibody, which successfully reduced the tumors after 6 rounds. However, her cancer relapsed, and she explored additional treatment options, including a clinical trial using anHDAC inhibitor(therapy that helps control how cancer cells grow and divide by affecting the cancer cell DNA). It initially stabilized the cancer but ultimately failed after 11 months. Consequently, Laurie turned to alternative therapies, includingradioimmunotherapy(delivering high dose radiation directly to the tumor cells) and a more aggressive chemotherapy regimen, but these also proved unsuccessful.
In 2011, Laurie enrolled in a clinical trial for aPi3 kinase inhibitor(a treatment that works to block a pathway cancer cells use to grow and survive that can slow a cancer’s growth and help keep it under control), which kept her cancer stable for over 5 years, albeit not fully eliminating it. During this time, she learned aboutCAR T-cell therapy, a cutting-edge treatment using a patient’s own T cells to target cancer cells. While initially not available for follicular lymphoma, CAR T-cell therapy became an option for Laurie in 2018. She consequently underwent the procedure — a remarkable 7th line of cancer treatment. As a result, she achieved remission for the first time in 12 years. As of 2024, Laurie has remained cancer-free. Her oncologist considers her cured, as her CAR T-cells continue to be detectable in her system.
Throughout her treatment journey, Laurie faced numerous challenges, including the side effects of chemotherapy, radiation, and steroids. She developedavascular necrosis, which required hip surgery, a consequence of long-term steroid use. However, despite these struggles, Laurie’s battle with cancer transformed her into a passionate patient advocate. She now works with 3 nonprofits, helping others navigate cancer treatment and advocating for more accessible and less potentially toxic therapies like CAR T-cell therapy. Laurie emphasizes the importance of finding a specialized oncologist, self-advocacy, and the value of second opinions and clinical trials in managing cancer.
Laurie’s story underscores the evolving landscape of cancer treatment, particularly in the context of immunotherapy. She highlights the importance of staying informed and advocating for oneself or having someone advocate on their behalf, especially as new therapies emerge. Through persistence, resilience, and research, Laurie continues to support others facing similar battles. She shares her journey to inspire hope and grow awareness.
This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider to make informed treatment decisions.
The views and opinions expressed in this interview do not necessarily reflect those of The Patient Story.
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Originally published on The Patient Story: https://thepatientstory.com/patient-stories/non-hodgkin-lymphoma/follicular-lymphoma/laurie-a/
