Patient Perspectives on the CLL Treatment Paradigm
Brian Koffman, MDCM, MSEd, provides insight from a patient’s perspective on self-advocacy and reflects on the positive direction in which the treatment paradigm of chronic lymphocytic leukemia (CLL) is heading.
PUBLISHED March 14, 2018
Brian Koffman, MDCM, MSEd: When you’re diagnosed with CLL, there is a before and after period. I think most patients remember the time before cancer and after cancer. But there are a lot of things that are much better after cancer. Gilda Radner said, “If it wasn’t for the downside, everyone would want cancer.” When you’re diagnosed with an incurable cancer, your life shifts, the perspectives change, and you recognize what’s really important, what should be your priority. I’ve developed friendships and I’ve developed communications with people around the world that I would never have if it wasn’t for my diagnosis of CLL. So, many things in my life are much better since my diagnosis.
The diagnosis and management of CLL is complicated and changing. But there are a couple of things that I think are critical for all of us patients to understand. The first is that you almost always have time when you’re diagnosed with CLL to consider your options. It is rare that treatment is needed immediately. So, take some time to familiarize yourself with the disease. Build a team of experts to help you. Rely on friends and other patients to get you through this journey, because another motto that we have at the CLL Society is, “We are all in this together.” By helping each other, we can improve the outcomes for everyone. We all learn from each other’s experience. Another difficult part of this journey is that we often have to make critical decisions with imperfect knowledge and conflicting advice. That’s unavoidable in CLL because things are changing so quickly. But we have to learn to live with that uncertainty.
I think it’s critical that patients be their own self-advocates. I think this falls into a couple of areas. One of our pushes is that patients be tested before any treatment, because the tests are not only of prognostic value, they’re of predictive value. What I mean by that is they can predict how well you will respond to different therapies. Even if you had testing done at the time of diagnosis, it’s important to have that testing redone before you consider any treatment, because that testing can determine how well certain therapies will work. So, one of the things I think patients need to do is push to make sure that they have their prognostic and predictive testing done before any treatment is considered.
Another thing in CLL that’s difficult, since there are, at this point, no certain curative therapies, is that it’s important to consider what your long-term plans are. It’s important to consider not only what your next treatment is, but what is your subsequent treatment to that. What’s your plan? Because most therapies, sadly, will give you a significant remission, but you will eventually relapse. And then, what are you going to do next? It’s important to have that kind of game plan put out in front of you. It’s important to discuss that with your treatment team so you’re thinking on the same line, because certain treatments may preclude other treatments down the line.
Things are changing rapidly in the CLL world. The best treatments today will be upstaged by better treatments tomorrow. There’s never a good time to get the diagnosis of CLL, but there has never been a better time to have the diagnosis of CLL. Educate yourself, build a team, connect with other patients, enjoy every minute of life, and you will get through this.