Even the simplest questions in CLL may have some controversy and subtleties in the answers.
What follows are most basic facts. We will be constantly developing and updating this site with more detailed commentaries.
What is CLL?
CLL (Chronic Lymphocytic Leukemia) is a typically slow growing blood cancer found in a type of white blood cell called a B-lymphocyte (lymphocytes are the predominant cells in lymph tissue). (See the commentary on Diagnosis)
Where are the CLL cells in my body?
CLL cells are found primarily in the blood stream, the bone marrow, the lymph nodes, and the spleen.
How is CLL diagnosed?
CLL is usually diagnosed from a blood test, although occasionally it is diagnosed from a lymph node biopsy. (See the commentary on Diagnosis for more details)
What causes CLL?
CLL begins when a single white blood cell, specifically a B cell lymphocyte, mutates and becomes cancerous. This single cell replicates, cloning itself. These CLL clones do not function like normal disease-fighting lymphocytes. Although the body’s lymphocyte count increases, the CLL lymphocytes (which are often the bulk of the lymphocyte count) are not helpful to your immune system.
Is there anything that increases the risk of getting CLL?
Radiation exposure from Chernobyl and exposure to Agent Orange have been associated with an increased risk of CLL. There is an unproven association with multiple prior episodes of pneumonia. There is no known increased risk from exposure to solvents and chemicals such as benzene that are proven to be associated with other blood cancers.
Did I inherit my CLL?
A small percent of CLL does run in families. 5% of CLL patients will have a relative with some kind of leukemia. A person is at 8.5 higher relative risk of getting CLL if they have a sibling or parent with CLL, but the absolute risk is still very low. Most people with CLL are the only one in their family who has this disease. MBL (monoclonal B cell lymphocytosis), a non cancerous precursor to CLL is also more common in the relatives of those CLL.
Can my children and grandchildren inherit CLL from me?
It is possible, but unlikely.
Is CLL contagious?
Are certain ethnic groups more likely (or less likely) than others to get CLL?
Yes. Ashkenazi Jews are at higher risk. In the USA there is a more CLL among Caucasians as compared with African Americans or Asian. The incidence of CLL is extremely low in China and Japan where it is estimated to occur at approximately 10% of the incidence found in western counties. In Africa the incidence is not as low as in Asia.
My diagnosis says “CLL/SLL”. What is SLL?
SLL stands for Small Lymphocytic Lymphoma. Because CLL is found in lymph nodes as well as the blood, CLL is classified as both a leukemia and a lymphoma. But CLL and SLL are the exact same disease, with CLL and SLL cells being exactly the same under a microscope. . (See the commentary on Diagnosis)
How is CLL different from SLL?
If you have SLL, the CLL cells reside mostly in the lymph nodes, rather than the bone marrow or the blood.
Are there different types of CLL?
Yes. And tests to determine what type of CLL you have may help determine how soon you are likely to need treatment, as well as what type of treatment would work best for your type of CLL. This is an extremely important topic to understand.
What does having a “chronic leukemia” mean?
A chronic leukemia grows slowly, unlike” acute” leukemias, which grow very rapidly and require urgent treatment. Treatment for CLL, a chronic leukemia, might not be needed for years…if ever.
My doctor referred to CLL as “the good cancer”. What does that mean?
It means your doctor does not understand CLL very well. There is NO good cancer! (See commentary on “The Good Cancer Diagnosis”)
How many years after diagnosis can a person with CLL expect to live?
Nobody can say, as this varies greatly from one individual to another. Many CLL patients have reason to expect to live out their normal lifespan.
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 30 % 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, 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 your preference and 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 type of CLL may have very long responses to FCR (a drug cocktail) 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. About 30% of CLL patients never need treatment for their CLL. Many CLL patients die with their 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, 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 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. (See symptoms)
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 experimental therapies 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?
An active ingredient in green tea, called EGCG, has been shown to slow 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 even therapies that show possible benefits in lab studies may not be clinically effective. Any complementary alternative therapy should be reviewed with your provider.
Who Should Know That I Have CLL?
Whom should I tell that I have CLL?
This is a personal choice and each CLL patient will probably have their own reasons for telling or not telling family members, friends, business associates, clients, etc.
Whom should I NOT tell about my CLL?
Everyone’s situation is different. Right after hearing that you have CLL you may need to take a deep breath and spend some time learning about CLL before you tell very many other people. Eventually as you understand more about the disease, you will have a better idea of who in your life should and should not know about your CLL.
Should I tell my children that I have CLL?
Of course it depends on your children and their ages, ability to understand, etc. But since a CLL patient may not need treatment for many years, many parents prefer not to tell their children right away.
Should I tell my clients/ boss /co-workers that I have CLL?
Again, it depends. But many opt not to tell their employer or clients. Once hearing the word “leukemia” a client or employer might mistakenly presume that you will be very sick very soon and therefore would be unable to work (which is very seldom the case with CLL.)
Overall Health And Well Being
Can a person with CLL live a normal life?
Usually the answer is yes, but like everything else with CLL, it depends. It depends on your particular case of CLL, on whether you are in treatment, whether you have persistent fatigue, etc.
Will my CLL get worse and worse over time until I am an invalid?
Probably not. If the disease gets worse, there are many treatment options that will very likely bring the CLL into remission.
Should I take special vitamins and/or supplements because I have CLL?
You should probably take vitamins and supplements only if you are deficient. For example if you have low Vitamin D levels, you may need supplements. This topic should be further discussed with your doctor.
As a CLL patient, should I follow a special diet?
Basically you should strive to eat a healthy diet. There is no special CLL diet.
How do I deal with the fear and anxiety that I feel much of the time since I learned that I have CLL?
Most normal people experience varying amounts of fear and anxiety when told they have leukemia. But CLL patients who are having a particularly hard time with anxiety and/or depression should talk to their doctor about this problem. Also, many CLL patients find that sharing their concerns with other CLL’ers, through either online or local support groups, can be a very good way to learn how to cope with the ups and downs of living with CLL.
Does having CLL cause fatigue?
Fatigue is a common complaint in CLL, but on the other hand, many CLL patients never seem to have much if any fatigue. Everyone is different. Some treatments may cause fatigue.
Do I need to limit (or increase) my exercise/activity now that I have CLL?
Most CLL patients will be able to continue or even increase their normal amount of exercise after being diagnosed with CLL. However, a patient with CLL-related fatigue may not be able to exercise as much as they would like. This would be a topic to discuss with your doctor.
Does having CLL put me at more risk for getting infections such as the flu? If so, why?
Yes, CLL patients are at higher risk of infections. In fact an infection (usually pneumonia) is the most likely cause of death of a CLL patient. CLL impairs our immune system, so that we are not as able to resist infection as someone with a normal immune system.
Should I stay away from crowds or take other health precautions now that I have CLL?
A CLL patient can’t live in a bubble, but a patient with CLL needs to be more vigilant than most people about avoiding germs and infections. We need to avoid sick people, be diligent about washing our hands, and should consider going to the doctor sooner rather than later when we feel sick or “off”.
Should I get a flu shot every year?
Yes. Because of our impaired immune system, we may not benefit from the flu vaccine as much as those with a normal immune system. The flu vaccine (the “shot”, not the nasal spray) can’t hurt us because the flu vaccine injection is a killed virus, and it just might help.
Should I get the shingles vaccine?
The old shingles vaccine (Zostavax) is a live vaccine, and it should NOT be given to someone with CLL or to anyone who has an impaired immune system. However the new Shingrix vaccine is a recombinant (not live) vaccine that is much more effective and should be strongly considered in discussion with your treatment team. For a deeper dive about the new vaccine, see this.
Is someone with CLL more or less likely to get an additional cancer, like lung cancer or skin cancer?
Those of us with CLL are more at risk for secondary cancers, simply because CLL causes our immune system to not be as good as it should be. So a CLL patient should be even more vigilant than those without CLL when it comes to having appropriate checks and tests for other cancers. That means that mammograms, skin cancer checks, PSA tests, etc. are as important as ever.
Barb Massey, Brian Koffman, and Patty Koffman