Like many in my profession as a nurse, I tend to be hyper-aware of my body. So, when persistent pain and swelling started in my lower abdomen, my mind immediately jumped to inflammatory bowel disease, and the more frightening possibility of colon cancer. Little did I know, my discomfort was signaling a completely different battle – one against non-Hodgkin lymphoma, a blood cancer affecting white blood cells. This type of cancer causes lymphocytes to multiply uncontrollably, overwhelming the body and hindering the crucial functions of red blood cells (oxygen transport) and platelets (blood clotting).
Never had I associated blood cancer with digestive issues. However, I soon learned that lymphoma can manifest in this way when lymphocytes accumulate and form tumors in lymph nodes near the gastrointestinal tract. This was precisely my situation, and ultimately, how doctors were able to pinpoint my condition. For individuals navigating complex health challenges, resources like the Mississippi M-car Counselors Evaluation Tool can be invaluable in accessing support and guidance during difficult times, although my immediate medical journey focused on specialized cancer care.
The Unfolding Diagnosis of Non-Hodgkin Lymphoma
My personal ordeal began roughly three years prior to my diagnosis. Persistent stomach problems and debilitating fatigue became my unwelcome companions. Having always been an energetic person, I found myself struggling with simple activities, even a short walk around the block left me exhausted. Initially, I attributed the fatigue to aging and took up yoga, hoping to regain my energy. Even yoga proved to be an uphill battle.
Seeking answers, I consulted my family doctor, who ordered a colonoscopy. The results came back normal, yet my symptoms persisted and worsened. A follow-up visit led to a CT scan of my abdomen. The scan revealed multiple enlarged lymph nodes scattered throughout my lower abdomen. The largest node was alarmingly the size of a lime, pressing against my abdominal aorta, the body’s main artery.
A needle biopsy of this enlarged lymph node confirmed the diagnosis: non-Hodgkin lymphoma. “You’ve got to be kidding me,” was my immediate reaction to my doctor. Lymphoma was nowhere on my radar. It was a diagnosis I never anticipated.
Navigating Treatment: Chemotherapy and a Double-Hit Lymphoma Setback
Living in a small Mississippi town, far from specialized medical facilities, presented an initial hurdle. My town had just a single four-way stop sign, and certainly no cancer specialists. My family doctor referred me to a cancer clinic in Meridian, a larger town within driving distance. The oncologist there initiated a standard chemotherapy regimen known as R-CHOP. This combination therapy includes rituximab, cyclophosphamide, hydroxydaunorubicin, oncovin, and prednisone.
Unfortunately, R-CHOP proved ineffective in my case. By the time I completed the treatment course, the cancer had progressed. A more extensive biopsy revealed a grim reality: I had double-hit lymphoma, a rare and aggressive subtype of lymphoma.
Most lymphomas originate from a single genetic mutation in a white blood cell, causing rapid multiplication. Double-hit lymphoma, however, involves two genetic mutations, making it significantly more challenging to treat. As my oncologist explained, we were facing “double trouble.”
Recognizing the complexity of my diagnosis, my oncologist emphasized the need for specialized care at a major medical center. After discussing several options, MD Anderson Cancer Center in Houston, consistently ranked as the top cancer center in the nation, emerged as the clear choice. For me, the decision was solidified by MD Anderson’s unparalleled reputation. Houston became my next destination.
Embracing Innovation: Joining a CAR T-cell Therapy Clinical Trial
Upon arriving at MD Anderson, I was introduced to Dr. Sairah Ahmed, my new oncologist. From our first meeting, I felt reassured, knowing I was in expert hands. Dr. Ahmed had thoroughly reviewed my medical history from Mississippi and presented a promising option: participation in a clinical trial underway at MD Anderson and other leading hospitals. She believed I could significantly benefit from this trial.
The clinical trial was designed to compare two treatment approaches for lymphoma: the standard chemotherapy combined with a stem cell transplant versus CAR T-cell therapy, an innovative, newer treatment. CAR T-cell therapy involves extracting a patient’s own infection-fighting T cells from their blood. These cells are then sent to a specialized lab where they are genetically modified to recognize and attack a specific protein found on the patient’s cancer cells. These engineered T cells are multiplied in the lab and then reinfused back into the patient’s bloodstream to target and destroy the cancer.
This clinical trial was specifically for individuals with aggressive non-Hodgkin lymphoma who had not responded to chemotherapy – a perfect description of my situation.
Dr. Ahmed inquired about my willingness to participate. My immediate question was, “If I were your mother, what would you recommend?” Her unequivocal answer, “I’d want you in this trial,” solidified my decision. I signed up without hesitation.
Preparing for the CAR T-cell Therapy Journey
While Dr. Ahmed initiated the process for my enrollment in the clinical trial, my husband and I returned to Mississippi to prepare for an extended stay in Houston. We packed our camper with essentials for the coming months and drove back to Houston. We found a campground conveniently located near MD Anderson, specifically catering to out-of-town patients undergoing treatment. During our stay, we formed strong bonds with fellow patients and caregivers, creating a supportive community.
Before commencing the trial, I underwent a series of comprehensive tests at MD Anderson to ensure my body was robust enough for CAR T-cell therapy. These tests included a spinal tap, lung function tests, an echocardiogram to assess heart health, and extensive bloodwork and lab tests.
With all tests cleared, I was officially admitted to the clinical trial. To my surprise and delight, I learned that I was the very first patient assigned to the CAR T-cell treatment arm of the study. This meant I would bypass a stem cell transplant and have the opportunity to experience this groundbreaking treatment. Furthermore, as a healthcare professional myself, contributing to scientific advancement held profound personal meaning.
Priming My Body and T-cells for CAR T-cell Therapy
Given the aggressive nature of my lymphoma, time was of the essence.
Within days of joining the clinical trial, I was seated in a comfortable chair, connected to an apheresis machine by a nurse. The machine painlessly extracted blood from my veins, separated and collected the T cells, and returned the remaining blood back into my body. The entire procedure was completed in about four hours without any discomfort. My T cells were then shipped to a specialized laboratory where they would undergo genetic engineering to target and eliminate my specific cancer.
The process of re-engineering the T cells takes approximately a month. During this waiting period, I received a chemotherapy regimen called RICE to keep the lymphoma under control. RICE is an acronym for rituximab, ifosfamide, carboplatin, and etoposide. My hair, which had just begun to regrow after the R-CHOP treatment in Mississippi, fell out again due to the RICE chemotherapy.
The CAR T-cell Infusion and Path to Recovery
Approximately one month later, my enhanced CAR T-cells arrived at MD Anderson. My husband captured the momentous occasion on video as the nurse infused the cells back into my body. The room was filled with supportive healthcare professionals who were watching and cheering, creating a truly celebratory atmosphere. I felt immense hope and confidence that this treatment would be effective.
Three days post-infusion, I developed a fever, a known side effect of CAR T-cell therapy. I was readmitted to the hospital for ten days for close monitoring until the fever subsided. Dr. Loretta Nastoupil, the lead investigator of the clinical trial, made regular visits. I felt incredibly well-cared for, like a VIP patient, a sentiment I believe is extended to every patient at MD Anderson.
Once my temperature normalized, I returned to our campground “home.” For the next month, I utilized the campground shuttle for daily check-ups at MD Anderson. CAR T-cell therapy protocols require patients to remain within 15 minutes of the hospital for 30 days post-infusion, and to have a 24/7 caregiver. My husband admirably fulfilled this role. We spent our time playing cards, watching movies, cooking meals together, and enjoying meaningful conversations.
Remission and Renewed Life After CAR T-cell Therapy
One month after the infusion, I arrived at MD Anderson for my final checkup before returning to Mississippi. Dr. Ahmed entered the examination room wearing a mask due to the ongoing COVID-19 pandemic, but her eyes sparkled with good news. “Congratulations,” she announced, “You’re in complete remission!” All detectable signs of cancer had vanished.
Today, over two years post-infusion, I remain in remission. After five years, I will be considered cured.
My health and energy have been fully restored. I now enjoy cycling six miles daily and walking two miles after dinner each evening.
My husband and I have recently retired and are excitedly preparing to embark on an RV adventure. Our itinerary includes the Grand Canyon, Yellowstone National Park, and Mt. Rushmore, followed by a scenic drive along the Pacific Coast Highway from Oregon to Southern California. Life is truly good.
Despite an initially poor prognosis, I refused to succumb to negativity. I focused on staying active, surrounded myself with loved ones, prayed, and placed my trust in the brilliant medical team at MD Anderson. Without them, I wouldn’t be here today.
Request an appointment at MD Anderson online or by calling 1-877-632-6789.
