Chronic Lymphocytic Leukemia: A Patient-Centered Approach
An expert provides tips for maximizing time with your oncologist and adhering to oral medication.
BY Katie Kosko
PUBLISHED August 26, 2018
WITH FOUR HIGHLY EFFECTIVE new drugs approved by the Food and Drug Administration for chronic lymphocytic leukemia (CLL) in the last few years, patients with this blood cancer are living longer now than they ever have before.
This also means that many patients will have to cope with the challenges associated with a chronic illness: treatment planning, adherence, communication barriers, late-effects and potential second cancers.
In an interview with Heal®, Matthew S. Davids, M.D., associate director of the Center for Chronic Lymphocytic Leukemia at Dana-Farber Cancer Institute and an assistant professor of medicine at Harvard Medical School, both in Boston, discussed ways in which patients with CLL can be involved and proactive with their care.
Heal®: How can a patient with CLL make sure that their preferences, needs and values are met during a discussion with their care team?
Davids: Coming to the visit informed is helpful. There are a lot of online resources that patients can use to become better in-formed. One is a patient group called the CLL Society. In addi-tion to a website, it has support groups that are very informa-tional and are in a growing number of cities across the country.
I would advise patients to make a list of questions ahead of time, because it’s hard to remember them when they are there, and the visit goes by quick. Being prepared with a list of questions comes in handy and helps keep patients organized.
Is there anything specific to CLL treatment or survivorship planning that a patient should know?
When an oncologist proposes a treatment plan, great questions to ask are: What are the alternatives? And, what are the pros and cons? In addition to asking how effective a treatment is, I always encourage patients to ask about side effects. Another good question is, what would happen if they decide to not get treatment now? Sometimes doctors who don’t see as many patients with CLL may have a lower threshold to start treatment, whereas if you are seen by a doctor specializing in CLL it’s possible they may recommend waiting longer to start treatment. I think it is helpful for patients to see a CLL specialist at least once early on in their course to have them on their team and to partner with their local oncologist.
Are adherence issues associated with this disease? If so, how can patients manage this problem?
We used to have just chemotherapy that we would give for a time-limited period of about six months. New oral therapies like Imbruvica (ibrutinib) can be highly effective, but requires continuous therapy, sometimes for years at a time. Imbruvica is once a day, but some other drugs are twice a day. Being on any medication for the long term is challenging for adherence, so we try to check in with our patients more to make sure that they are taking their drugs as directed, because unlike with chemotherapy we aren’t administering therapy in our offices anymore.
CLL patients tend to be on the older side, as the average age at diagnosis is 72. I advise these older patients, who are often on multiple chronic therapies to use a pill box that is labeled with day and time and that they lay out their pills the week before. This way a patient can see what they’ve taken each day and know that they’ve taken the right medication at the right time.
Because it is a chronic illness, what late effects might show up in patients?
One of the issues that arises even in patients with CLL who have never been treated is that over time, the disease can compromise the immune system.
For patients who have been treated, particularly those who had chemotherapy-based regimens, there are some potential late risks in terms of second cancers, such as acute myeloid leukemia or myelodysplastic syndromes. It’s a pretty rare phenomenon, but it can happen, so these patients should have regular testing of their blood counts.
I also advise patients to see a dermatologist on a regular basis, because we see skin cancers more frequently in patients with CLL, and they tend to be more aggressive. It is important to stay on top of that and address it proactively.
And, we always emphasize the need for patients to stay up to date with vaccinations.
What message would you share with someone living with CLL?
Be hopeful. We’ve made tremendous progress in the past few years, and patients with CLL are living much longer than they ever have before. We can already cure some patients with CLL, and we are working on clinical trials with all of the promising new targeted drugs that will hopefully develop curative strategies for the majority of patients with CLL in the near future.
This article is part of the Bringing the CLL Community Together program. Funding is provided by an unrestricted educational grant from Pharmacyclics, an AbbVie Company, and Janssen Biotech, Inc.