CLL FAQ — Overall Health, Well-Being and Risks
In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.
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, many treatment options will very likely bring the CLL back into remission and allow you to live a near normal life.
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 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. A recent study suggested a typical “Western diet” increased the risk of developing CLL but there is no evidence that any diet change will help change the course of the disease.
How do I deal with the fear and anxiety that I feel much of the time since I was diagnosed?
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 CLLers, through either online or local support groups can be a very good way to ease the stress and learn how to cope. Visit CLL Society’s Mental and Physical Health Resources page.
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.
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 or COVID-19? If so, why?
Yes, CLL patients are at higher risk of infections. In fact an infection (usually pneumonia) is a common cause of death in CLL patients. CLL impairs our immune system, so that we are not as able to resist infection as someone with a normal immune system. Also some CLL patients may not be well protected by vaccinations.
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”. During the COVID-19 pandemic, a well fitting N95 masks is smart in any high risk setting.
Should I get the shingles vaccine?
The older shingles vaccine is a live vaccine, and it should NOT be given to anyone with CLL, but the new SHINGRIX vaccine is safe. Talk to your provider about SHINGRIX.
Should I get a flu shot every year? What about other vaccines?
Yes. Because of our impaired immune system, we may not benefit from the flu injection as much as those with a normal immune system. But the flu shot can’t hurt us (because the flu shot is a dead virus), and it just might help. In fact we should get all appropriate ”killed” vaccines for our age, especially the two different pneumonia vaccines. COVID-19 vaccination is strongly recommended. While it may not provide robust protection for some, it could provide some protection.
Is someone with CLL more or less likely to get an additional cancer, such as lung or skin cancer, or other blood cancers?
Those with CLL are more at risk for many 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 mammograms, skin cancer checks, PSA tests, etc. are as important as ever.
Skin cancers are particularly common in CLL so appropriate clothing and sunscreen is mandatory. CLL patients are also at increased risk for secondary blood cancers related to the disease itself or to the drugs used to treat it. These include MDS (myelodyplastic syndromes), a malignant form of marrow failure and Richter’s Syndrome where the CLL changes or transforms into a more aggressive type of lymphoma.
