Nathan's Story: Choosing Chemotherapy-Free Therapy for CLL

Nathan Ferguson discusses why he pushed for chemotherapy-free treatment for chronic lymphocytic leukemia (CLL).
PUBLISHED February 21, 2020


Transcript: 

Harry P. Erba, M.D., Ph.D.: We’ll move back now to your journey. There you are with Dr. Flinn, and what did you hear him say? It sounded like you already had a very strong opinion, but how did you think about it?

Nathan Ferguson: I did. I was leaning definitely to not do any chemotherapy, I was IGHV [immunoglobulin heavy chain gene] unmutated. I knew that chemotherapy, while it potentially could work, had around a 50% failure rate at five years. I want to say the five-year data had just come out on the initial ibrutinib trials. And while it was a small study for non-previously treated patients, of the 31, 90% of them were still progression-free at five years. So just looking at that I thought it was obviously a better deal, and the curve was pretty much a straight line. And then the group that was in that trial that was previously treated with however many treatments, their curve was steadily heading down.

The doctor who I liked in Louisville, Kentucky, thought at that point I should maybe go through FCR [fludarabine, cyclophosphamide, rituximab] chemotherapy and save ibrutinib for down the road. And I’m looking at these data thinking, I want to be in the top group, not this previously treated group. So I went back to see Dr. Flinn. As I said, at the time it was a gray area in what the choices were. And he brought up that he was about have an ibrutinib and venetoclax trial start. And I had already read up on venetoclax and I thought, that’s what I want to do, immediately. It took a couple of months for Tennessee Oncology to get that spun up and get all their paperwork done, and I pretty much had all my stuff ready to go. I believe I’m his first patient in that trial with his group. The trial in other sites started earlier.

Harry P. Erba, M.D., Ph.D.: Is that standard treatment now, that combination?

Ian W. Flinn, M.D., Ph.D.: I wouldn’t call it standard. I think it’s an incredibly exciting concept in trial, and we’re still following patients like Nathan on it to understand the long-term outcomes. But it is a good therapy. I still think the single agent ibrutinib is probably the most common and the most standard frontline therapy. There are other frontline therapies with venetoclax that don’t use chemoimmunotherapy. But regarding the combination of venetoclax and ibrutinib, I don’t use it outside of a clinical trial. I believe in it and I’m hoping that this ultimately will be proven to be the best therapy, but there are a lot of questions that we don’t know the answers to.

As we talked about earlier, it’s also quite expensive if you’re not part of a clinical trial. And I think there’s real debate, or as we say “equipoise,” in the field. And we don’t know the answer about whether you’re better off sequentially using these therapies or using them together at once. And so I don’t do it outside of a clinical trial for most patients.

Harry P. Erba, M.D., Ph.D.: As long as you brought up clinical trials, I want to put a plug in for our audience that the studies that showed the benefit of these targeted therapies over chemotherapy were sponsored by your tax dollars, our tax dollars. They were sponsored by the National Cancer Institute, and it was Americans with CLL [chronic lymphocytic leukemia] who agreed to be on these studies to answer that very question that was facing you, Nathan, at the time. Lisa, what did you think about his choice?

Lisa Ferguson: I honestly did not have a strong opinion one way or the other. Nathan did a lot of research. Sometimes I felt like he over researched because of where we were in our lives. Our kids are in school and since we had just moved, and he was diagnosed within a couple of weeks of us moving, he didn’t go to work. So he had a lot of time all day long to research. And it was all we talked about for a long time.

Given everything that he understood and knew, and as a nurse himself, he understood things in a way that I didn’t. So I didn’t have a strong opinion one way or the other. There was some fear in feeling like he was a guinea pig. And at 45 years old, with young children, I didn’t necessarily want my husband to be a guinea pig. But I think that’s where the providers were really good about explaining the benefit and how this is one of Nathan’s best chances for a long remission. I trusted Nathan that he understood it more, and I felt that ultimately it was his decision because this is happening to his body. And yes, it’s our lives, but he had to be comfortable, and so I really put my trust in whatever he felt was best for him.

Transcript Edited for Clarity

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