• August 10, 2011
  • "I was sure the war was on. I was sure CLL cells were dying."

  • A patient treated as part of Penn Medicine's CART19 trial using modified T cells to treat his Chronic Lymphocytic Leukemia shares his thoughts about participating in the research.

For many years now, it has been clear to me that I am a very lucky man, but fifteen years ago when I was told I had cancer, it didn’t feel that way. I was terrified. I was only 50 years old with a wife and four kids. My three boys were out of the house and on their own at that point, but my daughter was only 9 and I could not bear the thought of not being there for her – to not see her grow up. But, like I said, I am indeed a very lucky man.

My diagnosis was sort of a "bad news, good news, bad news" thing. The bad news was I had cancer, chronic lymphocytic leukemia or CLL to be exact, the good news was that it was an indolent, slow growing type of leukemia that I could live with for some number of years with minimal treatment (prognosis for CLL patients in 1996 was roughly 6 to 15 years survival), but the bad news was there was no cure. Actually, there was the possibility of a cure by having a bone marrow transplant, but the survival rate of that procedure was only about 50 percent -- not good odds.

Because I was only 50 years old and in very good health (other than the cancer), my doctor at the University of Pennsylvania, David Porter, recommended that we take a "watchful waiting" approach. That meant check-ups and taking blood counts every three or four months to monitor the progression of the disease. He did his very best to convince me that I should live my normal life, that CLL was like having any other chronic health condition and that he would take care of me. He assured me I would see my daughter graduate from high school. I knew, just by the way he talked to me, he would in fact take very good care of me, but I struggled for quite a while to believe the rest of it.

As I said, I was lucky and did not require chemotherapy for five years after being diagnosed, but every check-up was a study in agonizing suspense. Every visit, I stood by the chart rack outside the exam room, holding my breath, waiting for the blood work to come back and breathing a sigh of relief when I saw good numbers. After each appointment, I’d walk back through the waiting room and look at the people sitting there waiting for their news -- some clearly far sicker and in more danger than I. Each and every time, I marveled at their courage and at how very lucky I was (sometimes guiltily), and every time, as I waited for the elevator, I silently wished them all well.

For five years, the news was always good, then it wasn’t so good – not awful, but it did mean I would have to have chemotherapy. It was another five years before I needed treatment again but then, as with most CLL patients, things started to speed up. My next treatment was in less than three years, and it was not successful in getting me back into remission. So another round of chemotherapy, with a different combination of drugs, was in order. It was at this point that Dr. Porter told me my cancer cells were becoming refractory to treatment and this latest round would be the last round with standard therapy. He said we would have to be more aggressive with more toxic agents, but rather than “beat me up” with that approach, it was probably time to consider a bone marrow transplant – not what I wanted to hear. I had already been feeling like I was slowly but inexorably being pushed into a corner with little or no room to move, and all of a sudden I was indeed out of room and had to make a decision I had been dreading for a very long time.

Fortunately, when I was finally confronted with the transplant decision, I was still relatively young, in good health and in the almost 13 years that had passed since we'd first discussed transplant, the procedure had been vastly improved with a survival rate of closer to 75 to 80 percent. I will admit that making a decision to take a step that could possibly be my last was pretty scary: A 75 or 80 chance of survival is pretty good odds, but a 20 to 25 percent chance of not making it was awfully hard to contemplate. Also, this decision would mean I would be on anti-rejection drugs for the rest of my life and all that goes along with that. But then again, most likely there would be a rest of my life, and I had so much more living I wanted to do.

But again, I got lucky. It wasn't long after the transplant discussion that Dr. Porter told me I would be a good candidate for a new clinical trial for CLL treatment that was just starting. Of course, entering the trial was my decision, but making the decision to participate in the clinical trial was really not that difficult. First of all, I implicitly trusted Dr. Porter and the entire Penn team that had been keeping me healthy for years, to keep me safe. Also, because my wife and I are scientifically trained, we could understand and appreciate the science involved – it was impressive. And probably the most compelling reason for me, I saw this treatment as another option to survive, to at least go into long-term remission, a chance to push off the transplant decision for years, which I hoped by then would be at least 99% successful. I even secretly held out hope that this procedure could be a cure.

When I reflect on my decision to participate in the clinical trial and in fact all the many decisions that were made over the years concerning my care and treatment for cancer, I realized what mattered most was that I had some modicum of control over what happened to me and above all that I had hope. Without these two things, I would have just been a victim of my disease. Again, I was lucky in that I received a full measure of hope and as much control as possible from my doctor and the exceptional Penn team.

So it began: My white cells were collected and modified to recognize and kill CLL cells. The day I was to get my modified cells back by infusion I was almost overwhelmed with excitement. It was that "hope and control" thing – it felt like I was really fighting back with a chance to win.

The three days of infusion turned out to be rather anticlimactic. It took less than 2 minutes to infuse the cells and I felt fine afterward. However, that fine feeling changed dramatically less than 2 weeks later when I woke up one morning with chills and a fever. Having experienced similar symptoms during chemotherapy I was sure the war was on – I was sure CLL cells were dying. It was about a week after I became symptomatic, that Dr. Porter walked into my hospital room beaming and announced that 18 percent of my white cells were modified T-cells and there was no sign of CLL in my blood – it was working and I was winning. It was another week later that I got the news that my bone marrow was completely free of detectable disease.

It has been almost a year since I entered the clinical trial, I'm healthy and still in remission. I know that this may not be a permanent condition, but I decided months ago to declare victory and assume that I had won. Having said all of that, I am still trying to grasp the enormity of what I am a part of -- and of what the results will mean to countless others with CLL or other forms of cancer. When I was a young scientist, like many I'm sure, I dreamed that I might make a discovery that would make a difference to mankind – I never imagined I would be part of the experiment.

 

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The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 17 years, according to U.S. News & World Report's survey of research-oriented medical schools. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $392 million awarded in the 2013 fiscal year.

The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania -- recognized as one of the nation's top "Honor Roll" hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; Chester County Hospital; Penn Wissahickon Hospice; and Pennsylvania Hospital -- the nation's first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.

Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2013, Penn Medicine provided $814 million to benefit our community.

 

 

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