Overwhelmed. That’s how some people describe chronic lymphocytic leukemia (CLL) diagnosis. Especially when you’re told to “watch and wait” rather than start treatment. Over 23,000 people in the U.S. are diagnosed with CLL each year.
Regardless of your treatment path, most people with CLL do well and thrive. The outlook or prognosis for this condition is better than ever. Here’s how to set yourself up for success and live fully with CLL.
CLL Follow-Up Care
About 80 out of 100 people with CLL don’t have symptoms when they’re first diagnosed. With early-stage CLL and no symptoms, you might not need treatment right away — early exposure to medicines might not improve your outcome.
Instead, you and your health care team will look for key signs that your cancer is getting worse:
- Unexplained weight loss
- Feeling very tired
- Fevers above 100.4 that last for more than two weeks
- Night sweats
- Swollen (enlarged) spleen
- Enlarged lymph nodes
- Repeat infections
During this wait period, you’ll stay busy. You’ll see your doctor for follow-up visits and blood tests. They’ll carefully check your white blood cell levels to see if they rise quickly — it’s a signal to start treatment.
CLL Medication Side Effects
A common class of CLL medication called Bruton's tyrosine kinase (BTK) inhibitors can stop your cancer cells from growing.
BTK inhibitors may cause side effects such as:
Bruising and bleeding. Although it isn’t serious, you can get bruises after taking these medications. If you notice it and have questions, ask your doctor about the bruises.
Rarely, BTK inhibitors can cause major bleeding in 2% to 4% of people taking them. But bleeding usually happens within the first six months after you start treatment.
If you’re taking BTK inhibitors, stay safe and alert your doctors if you:
- Need to have a surgery
- Need a dental procedure
- Are on blood thinners
Fast or irregular heartbeat. Around 10%t of people on BTK inhibitors develop an irregular heart rhythm called atrial fibrillation (AF). Stopping treatment may not mean AF goes away. Your doctor may suggest lifestyle changes and other therapies like beta-blockers for AF.
High blood pressure. BTK inhibitors can cause high blood pressure in 1 person out of 4. Your doctor can suggest the best lifestyle changes and medications to ease your symptoms.
Headaches. Over time, your headaches can get better. You can treat them with acetaminophen or even try a cup of joe. Make sure to drink plenty of fluids, too. But if your headaches don’t go away or get serious, see your doctor right away.
Nail changes. Brittle or split nails develop about two-thirds of the time with BTK inhibitor treatment. Ask your doctor about biotin supplements, or paint your nails with clear strengthening nail polish.
Muscle and joint pains. You can take acetaminophen for a few days to ease pain. You can also ask your doctor about alternating heat or ice.
Side effects from other medications
These inhibitors can temporarily lower platelet and white blood cell levels called neutrophils. But the medications can also raise your liver enzymes. Your doctor will run blood tests to monitor your health and adjust your medication, if needed. They may suggest stopping your medication entirely for a bit until your liver enzymes or blood cell levels return to normal.
P13K inhibitors can also raise your risk for pneumonia and a lung inflammation called pneumonitis. Your doctor may prescribe an antibiotic or steroids.
How to Ease CLL Treatment Side Effects
Treatments for CLL can work very well to keep your cancer from advancing. But just like any medicine, they can come with side effects. Here are some tips to help you better manage these unwanted effects:
Tiredness. Fatigue is very common with CLL medications. Eat a healthy diet, and do light exercise like walking. If you’re feeling tired, take short naps during the day. Allow your body to rest and heal. Short naps can help you feel more energetic, too.
Rash. Let your doctor know. It may get better on its own. If it’s itchy, an over the counter antihistamine may help.
Diarrhea. Drink plenty of fluids and stick to bland or simple foods. Try over-the-counter antidiarrhea medicines like loperamide (Imodium), but tell your doctor if it lasts more than three days.
When to call the doctor
Diarrhea that lasts more than a few weeks after you’ve started your CLL treatment can be serious. Your doctor can find out what’s causing it and may ask you to:
- Stop your medication for a while
- Take steroids to calm your GI tract down
Call your doctor right away if you have serious treatment side effects such as:
- Diarrhea with blood or mucus
- Fever of 100.4 F or more
- Chest pain, cough, or shortness of breath
- Shaking or chills
- Confusion
- Serious headache
- Swelling or redness
Living With CLL
When you live with CLL, it’s more than just doctor visits and going to treatment. There are other things you can do to stay healthy and navigate your life.
How to prevent chronic infections with CLL
CLL affects your white blood cells, and they’re less able to fight infections. So you’re more likely to get sick because of a weaker immune system. Your doctors may look out for respiratory viruses like COVID-19, flu, RSV, and pneumonia.
All these steps can help, but sickness can still happen frequently with CLL. Your doctor may suggest an antibiotic to prevent infection before it starts.
You may also get infusions of a substance called intravenous immune globulin (IVIG). There are risks and benefits to both, so talk about them with your health care team.
How to Talk About CLL
Perhaps you’d like to tell everyone and anyone about your CLL diagnosis and treatment plan. Other people may prefer to keep this information close to their vest and only talk about CLL to family, close friends, and a select few people at work.
There’s no right or wrong way to talk about CLL. But when you do, here are some things to keep in mind.
You may feel nervous or unsure about telling an employer about cancer. But you don’t have to tell them about it unless the CLL directly impacts your job. You will likely need to ask your boss or supervisor for time off to get treatment, though.
Consider telling your loved ones right away so they don’t feel hurt or lose trust. This also gives your loved ones time to process your CLL diagnosis, too.
At work, letting key people know can help you put backup plans in place if you ever need to be out of the office.
When CLL Comes Back
Once you have finished your CLL treatment, you’ll still follow up with your doctor. They’ll monitor you closely to:
- Order blood tests and CT scans
- Look for treatment side effects
- Catch early signs that CLL has returned
Your doctor will also talk to you about a CLL survivorship plan, which can include:
- A schedule for follow-up medication appointments, exams, and tests
- A list of possible late or long-term side effects from treatment
- Diet and exercise suggestions
- Other cancer screening tests you may need, such as tests for colon and lung cancer
- A vaccine schedule, to make sure you are up-to-date on needed shots
Can you lower your risk for CLL coming back?
There’s no surefire way to lower risk for CLL coming back. Most people treated for CLL see their cancer return at some point. But here are some steps to boost your overall health and strengthen your immune system:
Exercise. It can keep you healthy, but it may also help your body destroy cancerous cells.
Follow the Mediterranean diet. It’s an eating pattern that' s rich in:
Fruit and vegetables
Fish
Legumes
Healthy fats like avocado, olives, and olive oil
But the diet is low in saturated fat and processed foods which may lower your risk for CLL.
Sip green tea. One small study found that people tended to stay in the earlier CLL stages after taking 2,000 milligrams of green tea extract twice a day for six months, but it’s still unclear.
How to treat recurrent CLL
If your CLL returns, your treatment options are similar to the first time around. Your health care team will likely try a different BTK inhibitor, though. They’ll tailor your treatment based on:
- Your individual health
- What you’ve tried in the past
- How well prior treatments have worked
- Your age
- Where your CLL has recurred
- How serious your cancer is
Treatments for recurrent CLL can include:
Targeted therapies. These are medications that target specific proteins on or in CLL cells.
Chemotherapy to kill cancer cells. Chemo medications can be taken by mouth or injected into a vein (IV) or muscle. Chemo meds can also be combined with immunotherapy medications — it’s called chemoimmunotherapy.
Stem cell or bone marrow transplants. These are sometimes suggested if you have a type of CLL harder to treat, like one with a gene mutation.
Clinical trials. There may be new therapies being studied that you can try.
Where to Find Support
Many people with CLL may think about it getting worse over time, especially after being told to watch and wait rather than pursue active treatment. But you’re not alone — there’s lots of support.
Here are some options to look into:
Social support. The CLL Society offers patient support groups, as well as a peer support program and an emotional and spiritual advocate program.
Financial support. The PAN Foundation has a CLL fund that offers financial (assistance to eligible patients to help you pay for out-of-pocket health insurance costs. They provide up to $3,250 per year in assistance.
Medical advice. The CLL Society has a database of health care providers who specialize in CLL. They also offer an Expert Access Program, where they connect patients with CLL experts for a free, virtual second opinion.
Show Sources
Photo Credit: Westend61/Getty Images
SOURCES:
Journal of Clinical Oncology: ‘Phase II trial of daily, oral green tea extract in patients with asymptomatic, Rai stage 0-II chronic lymphocytic leukemia (CLL).’
CLL Society: “Patient Well-Being After a CLL Diagnosis,” “Managing Side Effects of Oral Targeted Therapies in CLL,” “The Importance of Preventing Infections,” “CLL and SLL Medication Side Effects,” “Recognizing When It Is Time to Treat,” “Indications for the Treatment of CLL / SLL,’ “Chronic Lymphocytic Leukemia Disclosure 101: Who, When, and What to Say About Your Diagnosis, Treatment, and Prognosis.”
American Cancer Society: “Key Statistics for CLL,’ ‘Living as a CLL Survivor.”
Infectious Disease Society of America: “IDSA 2025 Guidelines on the Use of Vaccines for the Prevention of Seasonal COVID-19, Influenza, and RSV Infections in Immunocompromised Patients.”
Mayo Clinic Press: “CLL and lifestyle: 8 changes that can help ease symptoms and slow cancer progression.’
JAMA: “Diagnosis and Treatment of Chronic Lymphocytic Leukemia: A Review.”
