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Watch and Wait Active Observation, or as patients often refer to it, “Watch and Worry” is at first glance one of the most counter-intuitive concepts in CLL management.
With many types of cancer, early detection is everything and the prognosis gets worse with more advanced stages of the disease. That is the philosophy behind regular PAP smears, mammograms, colonoscopies, and skin checks. Catch the cancer early.
Why No Treatment
In CLL there is no data proving that treatment at the time of diagnosis helps. In fact, there is some older data that indicates that it doesn’t. There are three reasons for the watch and wait approach in chronic lymphocytic leukemia:
- In a famous study published in 1998 that compared “Watch and Wait” to early treatment with chlorambucil, an oral chemotherapy, at that time the standard of care, found that the group on chlorambucil fared slightly worse.
- Until recently, most treatments were either toxic, ineffective, or
- Some 15-30% of patients may never need treatment so treating them early can expose them to toxicities with no benefits.
However, the new gentler oral therapies may make reason number 2 (above) less important. That is why there are ongoing clinical trials comparing Active Observation with early intervention using ibrutinib in high-risk patients, but until we have the results, outside of a clinical trial, watch and wait is still standard of care for the vast majority of patients.
Symptoms During Watch and Wait
Watch and Wait is an active time for patients.
Research done by the CLL Society showed that the most common symptoms were:
- Fatigue (50%)
- Swollen Lymph Nodes (47%)
- Anxiety (42%)
Other symptoms included night sweats, depression, bruising, recurrent infections, abdominal swelling, and shortness of breath. Only 17% reported no symptoms.
What to Do
While the majority of patients try to slow the progression of the disease through lifestyle and complementary/alternative medical approaches, except for one study that showed some slight benefit with a very specific green tea extract (ECGC), there is little data to support the extensive use of Vitamin D or turmeric or other supplements by patients. While these are usually safe, please check with your doctor before starting on any supplement. A healthy diet and regular exercise is clearly beneficial for all of us, especially those with cancer.
Talking to other patients in a CLL support group and learning more about your disease is often helpful in dealing with the watch and worry stress.
Your hematology/oncology team will want to follow you with regular examinations to check for, among other things, enlargement of the lymph nodes, liver, and spleen.
Lab work will monitor your blood counts and chemistries-but remember, we treat patients, not lab numbers. Don’t be too concerned over any ONE abnormal lab value. Trending over time is more important.
Depending on your clinical and lab findings, you might need to be followed as often as weekly or as rarely as yearly. Most patients are seen every 3-6 months until there is a change in status.
All CLL patients, even those who have never been treated, are at higher risk for infections and secondary cancers due to associated impaired immunity.
- Get all your appropriate “killed” vaccinations during this time while you have the best chance of mounting a more robust immune response (CLL patients should never get live vaccines).
- Be careful about your hygiene, especially in flu season and during the COVID-19 pandemic.
- See your doctors sooner rather than later with any new persistent symptoms. They can become serious quickly.
- Get all the cancer screening recommended for your age and gender, since CLL has a high propensity for secondary cancers.
- Use sunscreen and get regular skin checks.
Similar to all cancer patients, those with CLL are also at a slightly higher risk for vascular disease so diet, exercise, and BP control are even more critical. Exercise is especially helpful.
- Watch and Wait is usually an appropriate treatment.
- Some patients may never need treatment.
- There is no evidence that early treatment is of any benefit in chronic lymphocytic leukemia (CLL).
- Fatigue, swollen lymph nodes, anxiety, and other symptoms are common.
- Regular clinical and lab monitoring is standard.
- Evidence is scant that any supplements can help delay progression.
- Preventive care and a healthy diet and lifestyle are important during this time of active observation.