Navigating CLL Treatment and Your Mental Health
- Many people with CLL don’t need treatment right away, and watchful waiting is safe when the disease isn’t causing symptoms—treatment works best when started at the right time, not simply because CLL is present.
- Today’s targeted therapies give doctors multiple effective options, and the choice depends on each person’s health, lifestyle, and preferences—whether they want time‑limited therapy, oral treatment, fewer clinic visits, or a specific side‑effect profile.
- Even if the first treatment eventually stops working, patients still have strong options, with new BTK inhibitors, BCL‑2 inhibitors, degraders, and other targeted therapies in development, offering hope for effective care across many stages of CLL.
However, uncertainty does not mean a lack of options. Modern treatments have transformed the outlook for CLL, and doctors now have multiple effective therapies that can be tailored to individual patients.
Read More‘Watch and Wait’
One of the most difficult concepts for patients newly diagnosed with CLL can be understanding why their doctor may recommend watchful waiting, also called active surveillance, rather than immediate treatment. CLL can cause a high white blood cell count and enlarged lymph nodes without causing symptoms or affecting a person’s health. For patients without treatment indications, initiating therapy immediately has not been shown to improve survival. Instead, treatment can expose someone to side effects before treatment is actually needed.Dr. Kline explains: “What we know is that the treatments that we have currently available are, for most patients, they are safe and effective. We have really good options for treating this disease. So first priority is that we know that treating patients before they’re symptomatic doesn’t improve outcomes. So that’s a big area often of patient concern or patient anxiety.”
“And so telling patients, yes, you’ve got this high white count, or yes, you’ve got these lymph nodes that you can see, but if they’re not causing problems, we do not need to do anything about it,” she adds.
This approach does not mean that the leukemia is being ignored. Active surveillance means regularly monitoring for changes that could indicate the need for treatment. The goal is to start therapy at the right time rather than simply treating because the CLL is present. When treatment is needed, no single therapy is best for everyone.
Today’s CLL treatments include several targeted therapies, and the choice can depend on the characteristics of the CLL as well as a person’s other medical conditions, lifestyle, and preferences.
Expert Resources for CLL Patients
- CLL Treatment Decision Making — Exploring All Your Options To Find What’s Right For You
- CLL is Not Considered Curable So Treatment May Resume Years Later
- After the Initial CLL Diagnosis: The First Conversation
- An Oral Medicine for People With Relapsed CLL: Idelalisib
- BTK Inhibitors Play An Important Role In CLL Treatment & Management
CLL Treatment: Now or Later
Dr. Kline describes the decision: “And then among those treatments, it’s a question of really figuring out based on patients’ other health problems and of their preferences for things like open-ended versus time-limited treatment, number of office visits, IV medications versus all orals, which of, again, this menu of effective treatments, what’s the best choice for them?”
Some patients may prefer a treatment that is given for a defined period and then stopped, while others may prefer a continuous oral treatment. The number of clinic visits, medication schedules, potential side effects, other health conditions, and individual priorities can all be part of the discussion.
Another common concern is the fear that the first treatment will eventually stop working. CLL is generally considered a chronic disease rather than a curable disease for most patients, but this does not mean that treatment options run out after the first therapy.
Dr. Kline explains: “The other thing I try to reassure patients is that we’ve got a lot more tools than we did 10 or 15 years ago, and whatever we give you as your first-line treatment, you probably will need re-treatment.”
What’s to Come
For many patients, treatment can control CLL for years. If the disease eventually returns or becomes resistant to a particular therapy, another treatment can often be selected based on what the patient has previously received and how the CLL has responded. Research continues to expand the number of available treatments. New BTK inhibitors, BCL-2 inhibitors, BTK degraders, and other targeted approaches are being studied, giving physicians more potential options for patients whose CLL requires treatment in the future.
Dr. Kline stresses the importance of looking beyond the present: “And again, that it’s an exciting time in CLL research and that at the point where if you do end up needing third-, fourth-, fifth-line treatment, we’ve got new things in development that hopefully will be good options for you then”
Living with CLL means accepting that there may be some unknowns while also recognizing how much has changed. Treatment decisions are not simply about choosing a medication; they are about choosing the right treatment at the right time, based on the patient’s disease, health, and personal preferences.
Learn more about SurvivorNet's rigorous medical review process.
