Karen Koehler’s Immunotherapy Story

In September 2011, I was diagnosed with chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL), but they say they’re kind of the same. I was diagnosed via blood work, and was told by my doctor, “If you’re going to get a cancer, this is a great one to get. You don’t have to worry about anything.” He said you’ll probably go 20 years before we even have to do anything. I just went in every three months for monitoring with blood work.

But in July 2013, at the urging of my friend, I got a second opinion, and had a bone marrow biopsy. The results showed that I had these mutations that I didn’t know existed: one was a 17P deletion, the second was CD19, and there were quite a few others. These mutations meant the cancer was more aggressive and harder to treat. But still, nothing really changed. I felt fine, and kept going for blood work.

We knew that chemo wasn’t going to help me much, and that the prognosis was not great at all. My husband, Dave, and I had heard about CAR T cell therapy from my last doctor; he was so excited about it. He just thought that was going to be the best thing.

We sat down with the doctor and I said to her, “Can you get me into the CAR T cell trials?” And first she said, “Wow; they’re really only taking people that have had major treatment.” But then she said, “But you’re right. Why make yourself so sick with chemo? Let’s get you into a trial.”

She called over to Sloan Kettering, and we got an appointment immediately with Dr. Park.

It was explained that with CAR T cell therapy, they would take my white cells and reengineer them, so my own immune system fights the cancer. And when your immune cells kill off the cancer, you get very, very sick.

My doctor started me on Rituxan and I had a horrific response to it. No blood pressure, my heart was going down to nothing. So after that, they had to hospitalize me to give Rituxan on a very slow drip. But my doctor felt this tough reaction was actually a good thing—it meant I could qualify for the CAR T cell trial.

In October, they harvested my white cells to prepare them, and in February 2015 I was admitted to the hospital. They hit me with two days of chemo, which was nothing. I didn’t feel that at all. And then they gave me one bag of the CAR T cells. The reaction your body has to the treatment is called a cytokine storm. For me, the storm hit within an hour after finishing my bag of cells.

It was brutal, but I was prepared. I was excited because I knew the sicker I got that meant the better it worked. I ended up in ICU that night. I was there for eight days, in a coma for most of those eight days.

Recovery was really lying in bed for a month. I had to go to physical therapy. I think the scariest part of the whole thing was the mental aspect. It really affects you. They had a neurologist evaluate me almost every day. When I could talk again they kept testing me, asking things like, “Name five words that begin with the letter T.” I could only do two. But they were very calm and said, “It’s okay, it will come back.”

I was released on March 3rd. They did a bone marrow biopsy that day. I went back to Dr. Park a week later and he said, “That first bone marrow biopsy usually shows some cancer, so don’t be upset. Your body is still actually killing it off.” But the bone marrow report came back zero. I was thrilled.

My struggle now is that I was very active before cancer, with teaching and volunteering and exercise. I miss the teaching. My hobbies—I always walked, golfed, snowshoed, anything outdoors. That has not stopped. But my body is not the way it was before cancer. I get sick more easily for one thing, and I get more tired.

I’m still learning how far to push myself. I have to say to myself, “Okay, wait a minute, I just golfed 18 holes, and now friends want to go out to dinner. Should I do both?” I just got over a cold and I wanted to go for a hike and my husband said, “Should you be doing that?” I tend to push myself when I shouldn’t.

The other component which is unique is I did not go through a bone marrow transplant after treatment. I think almost 100% of people do. I had a donor set up. We had everything ready to go and Dave and I talked to the doctor and said, “We’re willing to gamble if you are; why can’t this be the cure? Why can’t just the CAR T cell therapy work?” We all decided that we would give it a shot and see how this works without the bone marrow transplant. So far, it’s worked. I’m still cancer-free over a year later.