CLL: Improving Treatment Options Offer A Lot of Hope
- Chronic lymphocytic leukemia (CLL) is often manageable for years, and advances in treatment have helped many patients maintain a good quality of life.
- Many people with CLL do not need treatment right away. Dr. Alexey Dunilov, a leading CLL expert at City of Hope in Los Angeles, explains that “the vast majority of patients” do not need treatment at the time of diagnosis.
- A “watch-and-wait” approach can can be used for years while doctors monitor the disease for any signs of progression and focus on preventive care.
- When treatment is needed, newer therapies have dramatically improved outcomes. Dr. Dunilov says “the whole picture is much rosier than it used to be a number of years ago.”
- BTK inhibitors and other targeted therapies can help control CLL with less toxicity than traditional chemotherapy, giving patients effective treatment options when therapy becomes necessary.
Many patients, in fact, may not even need treatment right away.
Read MoreCLL: After the Diagnosis
The first question that often comes up at the time of CLL diagnosis is whether treatment is necessary, Dr. Danilov explains. “And the vast majority of patients would not need treatment,” he says.This often comes as a surprise for newly diagnosed patients.
“We have shown time and time again that treating CLL early does not help people live longer,” Dr. Danilov explains.
New patients often see this “watch and wait” approach as “doing nothing,” but Dr. Danilov explains that monitoring is not nothing. It is simply putting off active treatment until the appropriate time.
“We will still do something about it, but not necessarily treat it right away,” he says.
A ‘Watch-and-Wait’ Approach
CLL can stay dormant, or inactive without causing symptoms, for many years, Dr. Danilov explains.
On average, he says it takes seven to eight years from diagnosis to when someone needs treatment.
“During that time we can optimize many things: We strongly encourage vaccinations because they have shown to improve outcomes in CLL… skin exams, optimizing other conditions if patients have medical conditions,” Dr. Danilov says.
Expert Resources for CLL Patients
- After the Initial CLL Diagnosis: The First Conversation
- Active Surveillance For Chronic Lymphocytic Leukemia (CLL)
- BTK Inhibitors Play An Important Role In CLL Treatment & Management
- A Decade of Progress: New Targeted Treatments Are Redefining What’s Possible For People With CLL
- BTK Inhibitors: Monitoring and Managing Side Effects During CLL Treatment
Though this “surveillance,” or “watch and wait” method is definitely good news for patients, it can understandably still be quite anxiety-provoking. It’s important to realize that the goal of monitoring is to catch CLL at the first signs of desease progression — that’s when treatment tends to begin.
When is Treatment Needed?
When treatment is needed, Dr. Danilov stresses that patients can and do still have good quality of life.
“Patients who get treated for CLL with novel drugs have the same life expectancy as people who do not have CLL,” he adds.
Part of the monitoring process involves being aware of symptoms that could indicate the disease is progressing.
Symptoms to watch out for include:
- Increasing fatigue or weakness
- Shortness of breath
- Swollen or growing lymph nodes (especially in the neck, underarms or groin)
- A feeling of fullness or discomfort below the ribs
- Frequent or worsening infections
- Easy bruising or bleeding
- Unexplained weight loss, fevers or drenching night sweats
Blood tests and regular exams are also important because CLL can progress without obvious symptoms.
CLL Treatment: BTK Inhibitors
Traditional chemotherapy has been phased out of CLL treatment in most cases.
Today, Bruton tyrosine kinase (BTK) inhibitors, targeted treatments that directly attack CLL cells while generally causing less toxicity than chemo, offer an effective way to control the disease.
If and when CLL patients do need treatment, thanks to these “effective and safe” therapies, the future still looks bright.
Questions To Ask Your Doctor
- Do I need treatment now, or is watch-and-wait appropriate for me?
- How can I manage stress and anxiety over this diagnosis?
- How often should I be monitored if I don’t need treatment right away?
- What signs or symptoms would mean it’s time to start treatment?
- Which treatment options are best for my CLL?
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