Chronic Lymphocytic Leukemia: What Happens at Progression?
Considerations for what happens when a patient progresses with chronic lymphocytic leukemia (CLL).
PUBLISHED February 26, 2020
Harry P. Erba, M.D., Ph.D.: What is his future like, Ian? What is Nathan’s future in terms of what’s next? Is he waiting for the other shoe to drop? And if so, do you have any tricks up your sleeve?
Ian W. Flinn, M.D., Ph.D.: I hope we’re not waiting for the other shoe to drop. I’m looking at this as a tremendous opportunity here to not have that happen. But certainly, ultimately, for most patients with CLL [chronic lymphocytic leukemia] the disease comes back, even on these exciting new drugs and exciting new therapies. But there are still opportunities here. I think he was on venetoclax for a short period. It might be that it gets repurposed and back in therapy. We’re now developing next-generation BTK [Bruton tyrosine kinase] inhibitors that overcome resistance. If someone becomes resistant to ibrutinib or to acalabrutinib, there are common mutations that occur, and there are now next-generation molecules and drugs that get around that side effect. So we’re trying to stay one step ahead all the time, and there clearly are other options.
Harry P. Erba, M.D., Ph.D.: And same thing is happening in acute leukemia, where we have these targeted therapies, and then the disease learns how to be resistant to them. And we’re learning how to target that. So there is a lot of reason for hope, but there’s not going to be one cure for every person. Nathan, how is it living with that knowledge that you’re on therapy and it might come back? How do you deal with that?
Nathan Ferguson: For me and my personality, I look at it more as right now I’m MRD [minimal residual disease]-negative. If I went to some doctor and they told me to get a full checkup, they could look and they wouldn’t find any trace of cancer in me, at least not CLL. I see that as even if it does come back, it’s not like it comes back and I will need treatment tomorrow. It could come back in 15 years and it might slowly progress at that point, and I will have another 10 years. Who knows what will be out there in that amount of time? The new treatment options that are coming down the pipeline right now are pretty amazing, and hopefully the kinks will be worked out of them if down the road, I need them.
Harry P. Erba, M.D., Ph.D.: Has this affected your interest in other health maintenance? Is it more or less prevalent?
Nathan Ferguson: I think like most people who are diagnosed with cancer, you get spun up and think, “All right, I’m going to go vegan and I’m going to work out every day,” and then life happens. Especially with this, once I had treatment, I’m back to my normal life prior to being diagnosed, for the most part.
Harry P. Erba, M.D., Ph.D.: Lisa, do you think so?
Lisa Ferguson: Life is normal. We have our new normal. I would say it’s pretty close to what it was before. For me, I’m a pessimist, I’ll be honest. I’m waiting for the other shoe to drop. As ready as I was for him to get treatment, there was a part of me that felt the opposite, that once he’s in remission, once he’s MRD-negative, then we’re on a timeline, and we don’t know what that timeline is.
And I’m a planner. I do very well with routine, so when Nathan was active duty Air Force and he would deploy, the way I coped with it was that I had a routine. I became, very much, a planner—here’s what we’re doing for the next whatever—so it is a struggle for me personally because I don’t know what’s going to happen. And I don’t like not knowing what will happen, but I will also say that this has forced me to be more appreciative of our lives right now and focus on how he’s healthy, he’s good, our kids are doing very well, and we are doing very well in our relationship. It’s difficult. It forces you to look at things differently.