CLL and Caretaking
Watch and Wait or Active Observation – or as patients often call 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 whole 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 earlier treatment at the time of diagnosis helps, and in fact there is some old 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 and at that time the standard of care, found that the group on chlorambucil fared slightly worse.
- Until recently, most treatments were either toxic or ineffective or both.
- Some 25-30% of patients may never need treatment, so treating them early only exposes them to toxicities with no benefits.
Reason number 2 may be changing with the new gentler oral therapies. That is why there are ongoing clinical trials comparing Active Observation with early intervention with 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:
Just because there is no active treatment, doesn’t mean it is an inactive 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 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.
Medical Monitoring:
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.
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.
Medical Concerns:
All CLL patients, even those who have never been treated, are at higher risk for infections and secondary cancers due to associated impaired immunity.
We advise:
- Get all your appropriate “killed” vaccines. CLL patients should never get live vaccines.
- Be careful about your hygiene, especially in flu season.
- See your doctors sooner rather than later with any infection. They can become serious quickly.
- Get all the cancer screening recommended for your age and gender.
- Use sunscreen and get regular skin checks.
Similar to all cancer patients, we are also at slightly higher risk for vascular disease so diet, exercise and BP control are even more critical.
Conclusions:
- Watch and Wait is usually an appropriate treatment strategy
- 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.
- Preventive care and a healthy diet and lifestyle are important during active observation.
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