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karen k: leukemia

I was treated for leukemia (CLL) in a CAR T cell therapy clinical trial.

Can answer questions surrounding the following topics:

How did you cope with the physical challenges of cancer treatment?

It was brutal, but I was prepared…I bounced back very quickly.

When Karen Koehler was first diagnosed with leukemia, she was told not to worry too much, and that by the time she needed treatment, there would be several new, excellent therapy options. But things didnt turn out that way—within three years of her initial diagnosis, she learned the leukemia had shifted into high gear, and was resistant to chemotherapy. Karen decided to pursue an immunotherapy clinical trial of chimeric antigen receptor therapy, or CAR T cell therapy, and today, she is cancer-free. 

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.

My original doctor moved out of state, so I was assigned to work with someone else at the hospital. The day of my first appointment with her, I nearly blew it off, I felt so great. I had golfed, I came home, I cleaned the house, everybody else took a nap. So I was shocked when I went in, and she told me the cancer had kicked into high gear.

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?” and she said, “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.

Halfway through our initial conversation with Dr. Park I realized he was trying to get us interested in this kind of treatment, so Dave and I stopped him and said, “No, you don’t understand; we want to do it tonight.”

He said, “Okay, but I need you to start some form of treatment first before we put you into a trial.” So they started me on Rituxan immediately and I had a horrific, horrific response to it. No blood pressure, my heart was going down to nothing. So after that they had to hospitalize me, to then do the Rituxan on a very slow, slow drip. But Dr. Park 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.

Dave’s family had a reunion in Florida that first week of April. We weren’t sure I was going to be able to make the trip. The doctor said, “There is no way you’re going to be golfing.” I said, “You’ll see.” I got down there and I golfed three times. I bounced back very quickly.

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.

I have to go for IV gamma globulin every month to keep my immune system up and running. Apparently, my new T cells are working very well and are continuing to kill off the B cells (which were the cancer cells). They do not know difference between healthy ones and cancer ones. I’m told this is chronic, and is another reason why I cannot go back to teaching, with all the germs in schools. 
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.

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