Lifestyle Changes After Being Diagnosed with CLL

Nitin Jain, MD: Has anything changed for you in the last year? From a couple of years ago, before your diagnosis to now, looking forward to the future in your life, your family, how have things changed, if they have changed?

Samantha Rine: The biggest change is probably in our mindset. Like a lot of people out there, we were busy all of the time, constantly going and trying to get a move on to the next thing. We slowed down a lot. In December when I was just MRD [minimal residual disease]-negative, we made the decision then that our life is a gift and we aren’t going to waste it.

We want to make a difference somehow in other people’s lives outside of our family. We were looking for ways to get out there and start helping people, and then COVID-19 [coronavirus disease 2019] hit. I’m sad to say that we haven’t been as impactful as we would have liked up to this point, but we’re hoping that soon we will be able to do more impactful things that help a broader range of people. I’m really looking for opportunities to do that. But when you get a diagnosis of something like this, you’re confronted with the idea and you have to face the reality that you have one life, and you must make it count.

One of the most reassuring things that you told me early on in the hospital was that CLL [chronic lymphocytic leukemia] is a chronic illness and we’re going to treat it as a chronic illness. We monitor it and maintain it. You live with it and go on, so that’s what we’re doing. Our priorities have shifted, and we focus on things that are important and let the little things go. But as far as day-to-day activities, I’m feeling fine. The activity level has not changed.

Doug Rine: It’s interesting because there are two different ways to look at it. One is you don’t want to let the diagnosis affect your life, change your life, and start worrying about it daily. But at the same time, you do have to keep it in mind that it is there. The easiest part for us is to, as Samantha mentioned, realize each day that goes past is one less day you have. What you do with that day becomes more important.

Nitin Jain, MD: This is wonderful. Thank you, Samantha and Doug, for sharing Samantha’s story. This will be very helpful for many patients and caregivers to hear the journey of a newly diagnosed patient with CLL, starting venetoclax and how it has changed, or perhaps not changed, their life. Thank you for listening.

Transcript Edited for Clarity