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Why shouldn’t I start treatment immediately, now that I have been diagnosed with CLL? Don’t I want to kill as many cancer cells as I can NOW, before there are more of them?
All cancer treatments have some toxicity, and CLL patients often go many years, even decades, before actually needing to be treated for their CLL. In fact, some 15-20% of CLL patients NEVER need treatment. So it is best to avoid possible adverse effects of treatment until the CLL patient clearly needs to be treated. Moreover, early treatment with one therapy (chlorambucil) has been shown to actually worsen outcomes. No early intervention has yet been shown to improve survival.
Is there a best or preferred treatment for CLL?
There are currently many different treatments for CLL. Your treatment should be personalized to your circumstances. There should be no “cookbook” approach to CLL management. The best therapy for each patient depends on many factors including the type of CLL, the patient’s age, health status, prognostic and predictive factors and treatment preferences.
How will my doctor decide which treatment is best for my CLL?
Your doctor will use various tests to assess what type of CLL you have, and how it is behaving. When considering treatment, he/she will also take into account any other health issues that you may have, such as heart or kidney problems. Then you and your doctor together should decide what treatment would be best for you.
Is there a treatment that will cure CLL?
Currently, the only known cure for CLL is a successful allogeneic stem cell transplant (getting a whole new blood system from someone else to replace your cancerous cells). Transplant is a high-risk treatment, but if it succeeds, it is possible for the CLL to be eliminated. A few select patients with a very specific low risk type of CLL may have very long responses to FCR, an IV drug cocktail usually delivered in an infusion center) that looks to some researchers as a possible cure, but this has not been proven.
Without treatment for my CLL, will I get worse and worse over time?
Perhaps, but often CLL “gets worse” VERY slowly. How rapidly or slowly the CLL progresses will depend on each particular case of CLL. And many CLL patients have a LOT of time before their CLL is “bad enough” for treatment. Again about 15-20% of CLL patients never need treatment for their CLL. Many CLL patients die with CLL, not from it.
Can my CLL get better on its own without treatment?
While there have been several credible reports of spontaneous remissions, it would be very rare for your CLL to actually get better over time. Many CLL patients’ disease can remain fairly stable for years or even decades. But without treatment the amount of CLL cells in the blood, lymph nodes, and bone marrow usually increases.
How is CLL treated?
There are many treatment choices for CLL, including chemotherapy, monoclonal antibodies, steroids, targeted therapies, experimental cellular therapies such as CAR-T, stem cell transplants, and more. And fortunately for CLL patients, new treatments continue to be developed in ongoing clinical trials.
How do I know when I should begin treatment?
When to start therapy should be a shared medical decision. Possible reasons are many and include drenching night sweats, unexplained fever or weight loss, a rapidly rising lymphocyte count or difficult to manage complications of the CLL such as low blood counts (red blood cells and/or platelets) or severe fatigue. It is important to note that in most cases there is no lymphocyte count alone, no matter how high, that demands treatment. Doctors treat patients, not lab results.
Will CLL treatments make me sick?
Reactions and side effects to treatment vary from one patient to another and from one treatment to another. But most treatments for CLL are tolerated reasonably well by most patients. Very harsh chemotherapy is seldom required to treat CLL.
Will CLL treatments cause me to lose my hair?
Hair loss is very unlikely with most current CLL treatments. The possible exception may be the harsher chemo that is sometimes needed as preparation for a stem cell transplant.
Will I have to be hospitalized when I receive CLL treatments?
Probably not, although some high potency therapies, CAR-T therapy and a stem cell transplant may require time in hospital. With those few exceptions, most CLL treatments are outpatient.
Will I have to miss work when I receive treatment for my CLL?
This will vary from one treatment to another and one patient to another.
Are there holistic treatments that are used to treat or reduce the risk of CLL?
In a small study an ingredient in green tea, EGCG, was been shown to slow disease progression in some patients early in their disease. Exercise may lower the risk of developing CLL, and those with a higher blood level of Vitamin D at time of diagnosis have slower disease progression.
Some non-clinical studies suggest a potential benefit for curcumin. There are some patients who have reported success with different therapies such as Traditional Chinese Medicine, low dose naltrexone and many other therapies, but these have not been rigorously studied. Moreover therapies that show possible benefits in lab studies often are not clinically helpful. Any complementary alternative therapy should be reviewed with your healthcare provider.