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Feature
My Genetically Modified Life
By Robyn L. Stacy-Humphries, MD
W olverine, Spiderman, Wonder
Woman and Deadpool are
superheroes that escape death
because of some kind of genetic
alteration. Humans always have been fascinated with
escaping mortality.
I should have died three years ago. Yet, I am available. Desperately seeking an open space in a phase 2 trial, we
alive. Although I do not have a superpower or movie emailed every academic program in the world and all of our medical
friends. We found one spot open at Ohio State — there was hope.
star good looks, I am a genetically
modified human. My T cells were removed in May of 2016 but there were
laboratory and FDA delays. To keep my disease from spreading, I
My odyssey began in 2011, when was given an off-label and very successful bridging chemotherapy
I was 48. I was practicing radiology, called Ibrutinib. When it was discontinued prior to infusion, my
balancing married life and three children,
running races and eating healthy. A month disease progressed rapidly and it seemed my palpable
before the older two kids were to graduate from lymph nodes doubled every few days. This was
high school, I felt a supraclavicular lymph node — always an both frightening and surreal.
ominous sign. Twenty-four hours later, after consulting with my Finally, on September 14, I received my
primary care physician, I stepped off a CT scanner and made my tiny bag of 600 million CAR-T cells
own diagnosis: lymphoma. via an IV flush. A host of medical
In 2016, after 14 rounds of chemo with 16 different poisons, four professionals were in the room for this
lymph-node biopsies, three indwelling ports, four lumbar punctures, anticlimactic event. Now we would
three bone marrow biopsies, septic shock, a broken arm from low bone wait, but not for long. Twenty-four
density, losing my hair twice, and surviving brutal head hours after infusion, I had a low-
and neck radiation, I stepped out of the PET/CT grade fever and my lymph nodes
and saw multiple new hypermetabolic lymph began melting like ice cubes. Five
nodes, stumbled to the waiting room to find days later, almost all the lymph
my husband, and we cried. My diffuse large nodes were gone, as the side effect
B Cell Lymphoma had relapsed only nine of cytokine release syndrome (CRS)
months out from an autologous stem cell began. My fever peaked at 104 and I
transplant. The third time with the same had marked hypotension. But, after three
cancer is never the charm. Furthermore, nights in the hospital, I was released. Four
I had no allogenic bone marrow match weeks after infusion, I was discharged home,
due to multi-ethnic genetics. What do
you say to your children? How exactly do with all my hair, and I returned to work part time.
you “get your affairs in order?” At my three-month visit to Ohio, complete remission was
Being a physician/patient has some confirmed. I’d been given a second chance at life.
advantages. Following the lymphoma The Novartis Juliet phase 2 trial was a success, with 40 percent of
research literature, I knew Car-T cell patients obtaining complete remission. The FDA approved my CAR-T
(Chimeric T Antigen therapy) had shown product, Kymriah, in 2017 for leukemia and in 2018 for lymphoma so
good success in phase 1 clinical trials. Car-T is a
process where the patient’s T cells are removed via
apheresis and the cells modified in a specialty lab. For
lymphoma, a CD-19 CAR is inserted into the T cells using a viral
vector. When the T-cells are reinfused, they attack all B cells carrying
this protein —abnormal and normal. The process results in an acquired,
manageable immunodeficiency and hopefully, complete remission. In
2016, no patients from the Carolinas had been treated and no trials were
8 | April 2020 • Mecklenburg Medicine
