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I Was Planning My Funeral. This Therapy Was My Last Chance.

August 30, 2017

Day 14 of CTL019 Study at U Penn.  Don Siegel, MD, PhD , Nicole Gularte, and Bruce Levine, PhD

By Nicole Gularte

As told to WebMD senior health writer Brenda Goodman

Last year, at age 34, I was done.

I’d fought an aggressive form of leukemia for seven years. Chemotherapy and immunotherapy tamped it down, but it would come back– six times.

The last time, I had cancer in my liver, my eyes, my brain, and in my central nervous system. Every day, I was getting a painful procedure called a lumbar puncture where doctors insert a long needle between the vertebrae to pump chemotherapy directly into the spine.

I had more than 200 of those lumbar punctures. I was hurting. I just couldn’t do it anymore. I went into hospice and palliative care.

During a time in life when many young women are planning their weddings, I was planning my baptism.

I wanted to be buried next to my father in a Catholic cemetery. To do that, I needed to be baptized into the Catholic Church.

The priest who baptized me took my hand and he said, “How long do the doctors give you to live?”

I said “Three weeks.”

He said, “But it’s not up to them to decide.”

What happened next was part miracle, part manic effort.

For the previous two years, I’d been hunting for a way to save my own life.

I was diagnosed with a cancer called b-cell acute lymphoblastic leukemia, or ALL.

When ALL strikes kids, they can be cured about 80 to 90% of the time. When it strikes adults, the cure rate is much lower, around 20-40% percent.

Right now, the best hope for a cure is a bone marrow transplant. Even if you get lucky enough to find a matched donor, it’s still not a sure thing—it only works about 30% of the time.

I had a perfect donor who was ready to donate to save me. I turned it down. I let my cancer relapse. My doctors at Stanford thought I was crazy.

I was betting on something else—an experimental therapy called CAR T therapy, which stands for chimeric antigen receptor therapy.

In CAR T, doctors take immune cells called T-cells and they genetically change them to hunt the particular kind of cancer you have. This changes these soldier cells into serial killers. A single CAR T cell can kill thousands of cancer cells.

The drawback with CAR T is that it can be extremely toxic to the body. An infusion of cells can cause the sudden release of chemicals that signal the body to produce inflammation—this cytokine release syndrome sends one-third to one-half of patients who get CAR T into intensive care. It can also cause neurologic side effects including brain swelling, seizures, and hallucinations.

Despite the risks, I still wanted it. Two years ago, I flew out to the University of Pennsylvania where they were testing CAR T on kids. I wanted to meet the medical team there. I wanted them to see how healthy I looked even though I had such a bad case of cancer. I left there feeling very inspired. I thought this was something big and I wanted to be part of it.

I came home and they froze my T-cells, just in case I ever qualified for the trial.

For the next two years, it didn’t seem like I ever would. I took a drug that gave me another temporary remission. My cancer came back in my central nervous system. The rules for the trial said that if you had cancer in your brain and spine, it had to be gone for at least 4 weeks before they could start the CAR T.

But it wasn’t going away, and I couldn’t handle any more lumbar punctures. I started planning my funeral.

I reached out to Tom Whitehead. His daughter, Emily, was the first child to get CAR T. She’s still cancer free. They’ve started a foundation to help other patients get access to the treatment.



He urged me to go back for another round of tests. There’s no scientific explanation for what happened next. I had a lot of people praying for me. I believe it was prayer. Tests showed the cancer was gone in my spine. It was in my bone marrow, but not in my spine.

Within a week, I was at the University of Pennsylvania, starting treatment.

I went through the cytokine release syndrome. For six days, I spiked a fever of 105. I don’t remember it, though.  I was pretty out of it. I thought it was one day.

As I was waking up, something else happened. When the leukemia spread to my eyes, I lost my ability to see color.  But after getting my first infusion of the cells, I was looking around my hospital room and some owls that my family had put up around the room to decorate suddenly turned neon colors.  A woman’s dress on TV turned from drab gray to bright red.  I got my color vision back.

On Sept. 7th, it will be exactly one year since I received my IV infusion of CAR T cells. Today, I’m cancer-free. What does that mean?

When you have leukemia, they do a blood test where they look for small numbers of cancerous cells that might remain in your body, even though you don’t have any disease. These lingering cells are a major cause of relapse. It’s called the minimal residual disease test. The last time I had it done, my test was negative.

Since I was diagnosed, I’ve never had a negative minimal residual disease test.

I know my cancer could come back.  That’s a possibility, but I believe it was a cure.

For the last seven years, I had at least three doctors’ appointments a week. Now I have one appointment every six months. I was able to take my first corporate job as a tax accountant.

It’s weird in a way, but I’m getting used to having a future again.

I think if the FDA approves CAR T, it will be the best thing that’s ever happened in medical history.

It is a major milestone. For 30 years, a bone marrow transplant was the only chance at survival. Even if this approval is just for children and not adults, any progress is progress.

The FDA approving this means that we can work on getting CAR T cell mainstreamed, which means that it will reach a larger group of patients.

We’re not just numbers. We’re not just statistics. We’re people, and I’m going to fight for our right to receive CAR T-cell therapy.

I fought with the FDA. I fought with the clinical trial. I fought with doctors. I went against all odds.

I did what I felt like I did what I was supposed to do. I fought for what I believed in.

I definitely made the right decision.


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