Laurie Adami

After over a year of experiencing persistent symptoms and being dismissed by doctors, 46-year-old Laurie Adami was diagnosed with stage IV incurable follicular non-Hodgkin lymphoma. She completed six cycles of chemotherapy and was in complete remission until scans at her 3-month follow-up appointment revealed she relapsed. Laurie began a 12-year journey of enrolling in clinical trials, trying new therapies, celebrating short-term success, relapsing and fighting to stay alive. In 2012, Laurie watched the documentary “Fire with Fire” and learned about Emily Whitehead’s miraculous journey and the promise of CAR-T therapy. She had to wait six years until a clinical trial opened for her disease. In July 2018, Laurie received her T-cells. One month later, her scans showed she was in complete remission. Today, she celebrates six years of being cancer-free and advocates for all patients to have access to these life-saving treatments.

In her own words, Laurie shares the story of her treatment journey and her road to CAR T-cell therapy.

While I was officially diagnosed in April 2006, my cancer journey began several years earlier. I was the president of a Los-Angeles based financial software company and a happy, but busy, wife and mother. My job required a lot of travel, and on my trips, I started to experience chronic sinus conditions and overwhelming fatigue.

For over a year, my doctors dismissed my symptoms and concerns. They considered me a hypochondriac and attributed my symptoms to overworking. Frustrated, I decided to visit a new doctor. After years of persistent symptoms and unanswered questions, I was diagnosed with stage IV incurable follicular non-Hodgkin lymphoma. The diagnosis devastated me, and I felt like my body had let me down. I was only 46 years old at the time and my son, August, was in kindergarten. There was supposed to be so much life still ahead of me.

At the time of my diagnosis, R-CHOP, which is a combination of a monoclonal antibody with chemotherapy agents, was the only treatment available. We hoped that the first round of treatment would be successful in putting me in remission. I left work and began four months of treatment. At the end of my six cycles, clear scans showed that my cancer was gone. I thought I was in complete remission and returned to my pre-cancer life, going back to work and regularly traveling to New York and London.

Three months later, a follow-up scan revealed the disease had already returned to my lungs. The only FDA-approved option for a second-line therapy was a stem cell transplant. I researched the treatment on my own and learned that it is not very successful for my type of blood cancer. Knowing there had to be more effective treatments out there, I began a 12-year journey of enrolling in clinical trials, trying new therapies, celebrating short-term success, relapsing and fighting to stay alive until I found my cure.

In 2008, I entered my first clinical trial for an HDAC inhibitor. The treatment helped me for a year until my cancer grew again. I received my third-line treatment, rituxan and bendamustine chemotherapy, for one year before I relapsed for the third time. Next, I tried an experimental radioimmunotherapy that did not bring any success. Over the years, I had received a total of 18 cycles of harsh chemotherapy that gave me side effects I am still managing today. None of these were effective in putting me in complete remission. New tumors had grown in my body and my cancer was back again.

At this point, I was only eligible for an allogeneic stem cell transplant, which uses donor cells. Because none of my siblings were matches, I was at a greater risk for developing graft-versus-host-disease (GVHD) and we weren’t even sure if the treatment would be effective. About 30% of allogeneic transplant patients die in the hospital from an opportunistic infection before they even get rid of their disease. Knowing the transplant wasn’t the best option, I began researching clinical trials.

In 2011, I was feeling so discouraged after my fourth relapse. Since my first clinical trial was such a positive experience, I decided to reach out to eight researchers around the world to find another clinical trial. One hour after I sent the emails, I received a call from UCLA. It was a miracle. They had one spot remaining in a phase 1 clinical trial for a PI3 kinase inhibitor. I enrolled in the trial and was one of 20 patients to be the first to receive the very experimental drug. The treatment gave me Crohn’s disease and never got rid of my cancer, but it bought me time by controlling my cancer for over five years.

While attending a Leukemia and Lymphoma Society event in 2012, I learned about a treatment no doctor had ever told me. There, they showed the documentary “Fire with Fire,” which features Emily Whitehead’s miraculous journey as the first pediatric patient to be treated with CAR-T therapy. I couldn’t believe her story and how my own body’s cells could be used to treat me. CAR-T seemed so different from any other treatment I had researched.

The next week, I saw my oncologist and questioned why nobody had ever informed me about CAR-T therapy. My doctor explained that it wasn’t in trial yet for follicular non-Hodgkin lymphoma. Inspired by Emily’s powerful story, I did my own research on the treatment. I talked to patients, I reached out to doctors, and I learned everything I could while I waited for a trial.

After my fifth-line treatment failed at the end of 2016, I tried a new monoclonal antibody that was just approved called Gazyva. The treatment kept me stable for about 10 months before my cancer returned. I was incredibly discouraged because every treatment I tried was just not working. The minute I would stop a treatment the cancer returned. I was running out of options but was determined to stay alive for August.

In spring of 2018, I received a call from my oncologist that there was a phase 2 trial opening at UCLA for CAR-T. The trial would include five patients with follicular and I would be the first one. My T-cells were harvested in June and on July 16, 2018, I got my cells back. On August 15, my scans showed that I was in complete remission.

It was unbelievable. When I checked into treatment, I had eight pounds of tumors. My one tumor was so large it was blocking my right kidney, which was at risk of failing. Within 4-5 days of getting CAR-T, my numbers were back to normal. Over the past twelve years I had gone through so much, and I just couldn’t believe that a treatment had finally worked.

Today, I celebrate six years of being cancer-free. My mission as a survivor is to raise awareness of CAR-T therapy for patients to have better access to treatment. I volunteer for several different organizations including the Leukemia & Lymphoma Society, the Lymphoma Research Foundation and the Cancer Research Institute. As a volunteer, I help newly diagnosed cancer patients, patients who are relapsing and patients interested in CAR-T navigate their cancer journeys. I also am an LLS Public Policy Volunteer Advocate and work to get greater access to treatments for patients.

Throughout my treatments, I discovered how much better being active made me feel and enjoy swimming and hiking. In 2019, I was even training to hike Mt. Everest base camp to raise money for LLS before COVID shut down the trip. I also love to cook, complete puzzles and travel. My favorite place to travel is Washington, D.C., to visit August, who now lives there. While visiting, I try to stop by a cell therapy company and advocate on Capitol Hill. Currently, I am in the process of writing a book that shares the lessons I learned throughout my 12-year cancer journey.

I am incredibly grateful for the two children – Emily and August – who kept me motivated to stay alive. At the time of my diagnosis, I wasn’t sure if I would make it to my son’s kindergarten graduation. I attended his elementary school, middle school, high school and college graduations. While my journey felt never-ending, the hope of Emily’s story inspired me to keep fighting day by day until a trial opened.

Without the Emily Whitehead Foundation, I wouldn’t have known about CAR-T therapy, the treatment that saved my life. I am committed to partnering with the Foundation to raise awareness for advanced therapies and help more patients have access to these treatments.

We receive messages from patients and families around the world with experiences similar to Laurie. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access CAR T-cell therapy or other advanced therapies.

 To search for available CAR-T or other immunotherapy clinical trials, visit our Clinical Trial Finder. To help us in our mission to give patients around the world the opportunity to Activate the Cure, Get Involved or Donate now.