My Story Begins Here and Ends with A Cure
Thanks to Thomas Whitehead and the Emily Whitehead Foundation, I am a seven-time leukemia Survivor. When I reflect back on the date of my initial diagnosis (October 26, 2010), I had no idea about the events that would transpire over the next seven years. I would have never predicted a journey so chaotic, and with such an extraordinary outcome. The last seven years has been a long battle full of challenge, risk, self advocacy, and research. Over the course of six years (2010 – 2016), I have had six relapses and have participated in three clinical trials (two at Stanford and one at UPenn). My last clinical trial at The University of Pennsylvania (CAR T-Cell – Novartis CTL019) saved my life, and in October of 2016, I became a seven-time cancer survivor. The journey to my getting CAR T-cell therapy at UPenn, however; was not as smooth and exciting. I began fighting for CAR T-Cell treatment in 2014 and it took over two years and half-a-dozen “no’s” before I was treated. It is ironic that on the anniversary date of my original diagnosis, I shared my story at The University of Pennsylvania for the launch of The Parker Institute for Cancer Immunotherapy. Today, I am an active patient advocate and keynote speaker. My partner, Anna Gutkina (also an immunotherapy survivor), and I are working together to support clinical research and build lasting relationships within our communities.
My first clinical trial at Stanford in 2010 was a CALBG protocol with standard chemotherapy. This is still a common treatment protocol for many first-time leukemia patients. I suffered from nearly every possible side effect. During my first year, I spent eight to fourteen hours a day and nearly each day of the week, getting treatment. I suffered nearly every side effect possible which made life awful. Hospital admissions were far too often and way too long. The treatment was highly toxic and I struggled in nearly every aspect.
After an intense two years, I slowly worked my way back into normalcy. But in the middle of recovery, both of my knees went out. Doctors confirmed avascular necrosis (bone death) in both knees, and I was in surgery the following Monday. The avascular necrosis was a side effect from Prednisone, a potent steroid given during treatment. In July 2013, a subchondroplasty (a major procedure for bad joints), was performed on both knees. It took over four weeks just to stand up and put weight on my feet and it took eight additional weeks to learn how to walk again. Since the outdoors and hiking are my passion, I was torn by the fact that I would never be able to hike again. The emotional recovery from this set back, would take years.
Stay Patient and Trust Your Journey
In April 2014, I was devastated after Stanford doctors delivered news of my cancer relapse. The thought of going through a transplant had me scrambling for other options. I understood the fact that there was about a 50% chance that I would relapse within five years on the CALBG trial, but I had no idea that a relapse would require intensive chemotherapy all over again. Furthermore, bone marrow transplant would need to take place after a remission. When I asked if there were other treatment options, my doctors discussed CAR T-cell, but when I asked what CAR T-cell therapy was, my doctor said, “Nicole, you will never live to see CAR T-cell. Not in your lifetime”. Unsure of what to do with my only option, I quickly checked out of the hospital and went home.
A different hematologist from Stanford called me shortly after leaving the hospital and asked if I would come in to discuss the possibility of a new clinical trial. Before I knew it, I was in a Phase I trial for Pfizer’s, Inotuzumab Ozogamicin. This particular drug uses antibodies that target and kill specific cancer cells. I was given the drug in the hospital where doctors monitored me for several weeks. I achieved a complete remission and was able to return home where I would wait for a transplant donor match.
CAR T-Cell Therapy
Chimeric Antigen Receptor (CAR) T-cell is a form of immunotherapy where human T-cells are modified, grown in a laboratory, and re-infused back into a patient. The idea of CAR technology, is to have a “receptor” that allows the T-cells to continuously recognize, attack, and kill cancer. Researchers at The University of Pennsylvania opened its first ALL trial for pediatric patients in 2012. Emily Whitehead, just five years-old, had her leukemia return three times. She was the first child in the world to receive T-cell therapy.
The Butterfly Counts Not Months But Moments and Has Time Enough
I requested Stanford send me to UPenn to discuss the trial, but my team of doctors did not agree that the CAR T-cell would be best for me. Without a stem cell or bone marrow transplant, my cancer would always return. When reflecting back on the three years of agony from a plethora of chemotherapy cocktails, I was reminded of the daunting list of side-effects that continues to grow and haunt me today. A transplant has serious complications; with only a 30% success rate — whereas the CAR T-cell treatment has a 94% success rate. I realized my quality of life was worth more than time that cannot be well spent.
The Road Less Traveled
I took it upon myself, and reached out to UPenn requesting a consultation for their new CAR T adult ALL study. It took a lot of effort and half a dozen “no’s,” before I was able to be heard. In August 2014, with my mom and aunt by my side, I flew out and met the team of hematologists, researchers, nurses, and pathologists. They were unsure about whether I was making an informed decision, but once I explained my story along with my research, they were confident I was well informed. Dr. Don Siegel, MD, PhD, Director of Pathology and Laboratory Medicine was shocked to learn I had come all the way out there from Stanford. He asked how I heard about CAR T-cell therapy and proceeded to show me a video about Emily Whitehead. This was the first time I had learned about Emily and from that moment forward, she became my hero. While collecting my t-cells, Dr. Siegel shared how Dr. Carl June, and Dr. David Porter discovered CAR T-cell therapy. I could sense the passion and determination in his voice. Dr. Siegel then gave me a tour of the new facility (funded by Novartis and LLS), showed me where my t-cells would be stored, and let me take a peek at the laboratory where t-cells would be manufactured. The entire process is phenomenal. After meeting the team, seeing the facility, and hearing the stories behind their discovery, I left UPenn feeling, believing, and knowing that this was the beginning of something amazing, and I wanted to be a part of it. After returning to Stanford, I turned down my transplant donor and explained that I was going to allow myself to relapse just so I could qualify for the CAR T-cell trial.
Be the Change You Wish to See in the World
By the end of 2014, I showed no signs of a leukemia relapse. Summer passed. Fall came. Fall went. In November 2014, I decided to move forward with a second bi-lateral knee surgery, because the first surgery did not work and I had difficulty walking. Although it was not as intense as the first surgery, it took months to physically and mentally heal.
In March 2015, I learned that CAR T-Cell trials were opening for pancreatic cancer. The only other young adult I’ve ever known to have cancer, was a good friend, father, and fighter. Jay Cook and I had been friends since my sophomore year of college. He brought a large box full of DVD’s and a Blue Ray player to my hospital room at Stanford when I was first diagnosed in 2010. Three years later he was diagnosed with pancreatic cancer; and it was I, visiting him at the hospital. Just one year later (April 2014), when my leukemia relapsed, Jay passed. He fought a tough battle; now I must fight for him.
Where There’s A Will There’s A Way
In May 2015, after recovering from Pneumonia, surgery on a detached retina confirmed Leukemia in my eyes. In fact, I had never really achieved remission from the Inotuzumab, rather the leukemia had gone straight to my eyes — an isolated CNS relapse. At this point, I still had not relapsed in the bone marrow which meant I did not qualify for the CAR T study or any other clinical trials. So, I began my third attempt to kick this cancer. I started radiation therapy in both eyes which resulted in total vision loss in the left eye. Shortly after completing radiation, tests verified leukemia had gone to my spinal fluid. I received three different chemotherapy drugs via spinal tap, three days a week, tailored down monthly. Theses treatments continued for over a year. Although the odds were not in my favor, I lived as though they were. My local coordinator at the Leukemia and Lymphoma Society asked if I would share my story at a couple of events, and I felt honored; for it would be the first time I ever share my story publicly.
Teamwork Makes the Dreamwork
We are all touched by cancer in some way; if not by now, then somehow, someday. Immunotherapy and CAR T-cell therapy have been granted “breakthrough” cancer treatments for many forms of cancer. As I continued through treatments, I felt the need to raise awareness for these new forms of therapy. I reached out to those wanting to help spread awareness and we created the dream team under the Leukemia & Lymphoma Society, called Team Nicole For Awareness. We raised over 25K for the LLS while I shared my story in various cities and at different events. It was difficult (as a team captain) to manage a team, fundraising events, and give speeches while receiving treatment. I became overwhelmed and frustrated, but the dream team came together and made it happen. They reminded me that when I fall, to get back up.
I am Aware That I am Rare
I completed radiation to both eyes in July 2015, but shortly after, relapsed in the spine once again. I continued to fight my fifth leukemia relapse for the remainder of the year. A full remission was achieved; however, I knew it wouldn’t be lasting.
It was not until April 2016, when Stanford doctors confirmed a bone marrow relapse. I immediately flew out to Philadelphia to take necessary exams and sign all required documentation for the T-cell manufacturing process. I flew back home to California, and had three weeks to pack bags and make arrangements for my six-week stay at U Penn for the T-cell therapy beginning in July. During this period, Stanford doctors confirmed my worst nightmare — my most recent spinal test result confirmed yet another relapse in the CNS. This immediately disqualified me from the T-cell trial.
As July approached, I was terribly saddened by the fact that I should have been starting the T-cell trial. Instead, I ended up in the hospital for two weeks with fevers, infections, and severe migraines. The source of the infection was never found, and my migraines were likely a side effect from having over 200 spinal taps. On top of this, I now had leukemia in my lymph nodes. I began to quickly lose hope from this moment forward.
In August, after no improvement, I decided it was time to stop treatment all together. The chemotherapy was toxic and my health was declining. A Stanford palliative care team sent me home with three to five weeks to live.
In an effort o obtain guidance from an expert in patient advocacy, I reached out to Thomas Whitehead, father of Emily. I knew Tom and Kari Whitehead would have a great deal of knowledge and experience in this area. After explaining my situation to Tom, he did everything in his power to help me. He even tried to get me my t-cells under “compassionate care” which would allow me to receive my T-cells at Stanford rather than The University of Pennsylvania. This was the first time ever, that I received help or assistance in my fight for CAR T. Tom advocated on my behalf, stood up for my rights, and encouraged me to reach out to others who once faced similar situations.
The Power of Prayer
As I began planning my burial, I realized that although my entire family is Catholic, I had never been baptized. So, my best friend planned a baptism, and a lovely Catholic ceremony marked the most beautiful day in my life. After four weeks, I went to Stanford for a routine check up. Surprisingly, my labs looked very normal considering I had not had any blood or chemotherapy in over a month. My doctor talked me into getting one final spinal tap to check the cancer in my CNS. The results revealed a miracle — no cancer detectable. I now qualified for the T-cell trial at U Penn.
Fighting Fire with Fire
On August 28, 2016, within a week of receiving the good news, I was on a flight to Philadelphia. On September 6th, I received my modified T-cells. Supporters documented my T-cell journey on social media on a regular basis. You can find my Facebook group, Fighting Fire with Fire – Nicole’s Journey U Penn, to learn more. This group is now open to the public. You can also find me on Instagram as fight4cures15.
Paying It Forward
On October 4th I finished my T-cell therapy and achieved a full remission. My journey has made me who I am today. In spite of all my struggles, I am a happier, healthier individual dedicated living a life of purpose. I dedicate much of my time to helping others with all forms of cancer. I have encouraged others to reach out to me for assistance and inspiration.
On October 25th, I shared my story with Dr. Carl June and his research team at the grand opening of The Parker Institute of Cancer Immunotherapy at the University of Pennsylvania. This was a celebration to honor Sean Parker’s $250,000,000 allocation to cancer research. This event also marked the opening of several new clinical trials in the U.S. for solid tumors.