Ready to Start Treatment for CLL and Want to Know Your Options?

This article is for patients with chronic lymphocytic leukemia (CLL) who are ready to start treatment, or anyone who wants to learn more about how CLL is treated. The goal is to teach you how your healthcare team will select treatment and how they will follow up with you to help manage your side effects.

You will learn:

• What CLL is

• How patients with a new diagnosis of CLL are treated

• Benefits of treatments for CLL

• Side effects of medicines used to treat CLL

• When to contact your healthcare team about side effects

• Questions to ask your healthcare team

CLL is a form of cancer that happens when your body produces too many B cells, a type of white blood cell (WBC). The B cells crowd out other cells in your blood, bone marrow, lymph nodes, and spleen. This causes damage to other cells, which can lead to feeling tired, losing weight, and being more prone to infections.

You may not need treatment for your CLL if you do not have any symptoms. Your doctor will decide the risk status of your CLL based on certain features. If you have "low-risk" disease and no symptoms, you may not require any treatment. Your doctor will monitor you carefully with regular physical exams and blood tests to know when you may need treatment. Some patients have CLL for years before they need treatment.

Things your doctor will look for include:

• Blood work showing that your bone marrow is damaged

• Increase in the size of your spleen or lymph nodes

• A rapid increase in the number of WBCs

• New lumps in your body

• Weight loss, being so tired that you cannot work or do other activities, night sweats, fever that lasts more than 2 weeks

There are several medicines used alone or in different combinations to treat CLL:

• Chemotherapy -- kills fast-growing cells

• Immunotherapy -- uses your immune system to fight cancer

• Targeted therapy -- attacks cancer cells that have certain proteins or mutations (changes in the DNA of cells)

You will get one of the following treatments: targeted therapy, targeted therapy plus immunotherapy, or chemotherapy plus immunotherapy (chemoimmunotherapy).

The treatment you receive will depend on your age, overall health, and results of blood tests (like mutations in your cancer cells). The table lists some of the commonly used treatments.

Targeted Therapy	Targeted Therapy Plus Immunotherapy	Chemotherapy Plus Immunotherapy(Chemoimmunotherapy)
Acalabrutinib Ibrutinib Venetoclax	Acalabrutinib and obinutuzumab Ibrutinib and obinutuzumab Venetoclax and obinutuzumab	Bendamustine and rituximab Chlorambucil and obinutuzumab Fludarabine, cyclophosphamide, and rituximab

• All medicines used to treat CLL help keep the disease under control and, in some patients, clear it from the body completely

• They all have side effects; most side effects are minor, but some are serious

• You and your healthcare team will monitor for side effects together; it is important that you follow your doctor's instructions about symptoms of side effects and what to do if you have them

Patients usually receive chemotherapy in combination with immunotherapy (chemoimmunotherapy).

Your body can react to some of the immunotherapy medicines that are given by an intravenous (IV) infusion. Your healthcare team will watch you carefully while you are receiving the infusion for chills, itching, and fever.

Chemotherapy can cause damage to your bone marrow, which can keep it from making blood cells that fight infection. This means an infection that would normally be a minor problem could become life-threatening.

Most patients can go home after receiving chemoimmunotherapy, but it is important to watch for signs of an infection (such as fever or flu-like symptoms) so you can get help before the infection becomes serious.

The targeted therapies for CLL are ibrutinib and acalabrutinib (which block a protein called BTK) and venetoclax (which blocks a protein called Bcl-2). Some of the most common side effects of these medicines include:

Ibrutinib	Acalabrutinib	Venetoclax
	Anemia (low red blood cells) Neutropenia (low WBCs) Thrombocytopenia (low platelets) Diarrhea Muscle and/or skeletal pain
Bleeding Bruising Feeling tired Fever Nausea Rash	Headaches Upper respiratory tract infection	Cough Edema Feeling tired Nausea Upper respiratory tract infection

Not all the common side effects are in the table. Ask your doctor for a complete list of the most common side effects for the medicine you are taking.

There are several rare but serious side effects that your doctor will watch for, including atrial fibrillation and bleeding risk.

Atrial fibrillation is an irregular heart beat that can quickly cause other serious complications, like blood clots and stroke. It is especially a concern for patients who already have risk factors for heart problems. These include high blood pressure, acute infections, or a history of abnormal heart rhythm. Your doctor will consider your risk for heart complications before treating you with ibrutinib.

Bleeding risk is especially a concern if you are already taking a blood thinner. Avoid using over-the-counter medicines and supplements that might slow down clotting (such as fish oils, vitamin E, aspirin, and nonsteroidal anti-inflammatory medicines), unless allowed by your doctor.

Severe bleeding can occur. Tell your doctor if you have bloody or black stools, a change in urine color, bloody vomit, or a severe headache that won't go away.

There are several rare but serious side effects that your doctor will watch for if you are taking acalabrutinib.

Similar to ibrutinib, 2 of the more concerning side effects of acalabrutinib are atrial fibrillation and risk of bleeding. Although these side effects can occur, they happen less often than with ibrutinib.

Your doctor will look at your risk factors for heart complications carefully when considering this treatment for you.

Venetoclax can cause a condition called tumor lysis syndrome (TLS). This happens when waste products build up quickly as leukemia cells die. In severe cases, it can result in serious damage to the heart or kidney.

To prevent TLS, your doctor will start your venetoclax treatment at a lower dose and increase it to full dose over 5 weeks. If you are at a high risk for TLS, your doctor may decide to keep you in the hospital when you start treatment and during dose increase to let the healthcare team provide you with intense support. Your doctor will also prescribe you a medicine called allopurinol to help prevent this side effect. You can also help prevent TLS by drinking plenty of water.

If you have any side effects from your CLL treatment, make sure to report them to your healthcare team. They can let you know the best course of action. It is important that you keep taking your medicine unless your doctor tells you to stop.

Your healthcare team may recommend one of the following to help manage your side effects:

• Continue taking your medicine, and monitor symptoms

• Take an over-the-counter medicine for symptoms (eg, loperamide for diarrhea)

• Go to the emergency room

• Stop treatment until symptoms go away

Newer medicines for CLL work very well and may get your CLL under control quickly, so your symptoms may go away. But even if you feel fine, you should continue taking your medicine as prescribed by your doctor.

If you stop taking your medicine or miss doses, your CLL is more likely to come back or become resistant to the medicine and you may have to start a new treatment.

• Why have you recommended this treatment for me?

• Do you have information for me about financial assistance?

• How often will I need to have blood tests?

• If I have an infusion, how long will it take?

• How often will you monitor me to see if the treatment is working?

• How will I know if my treatment stops working?

Congratulations!

You have successfully completed the program: Ready to Start Treatment for CLL and Want to Know Your Options?

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NCCN Guidelines For Patients^®: Chronic Lymphocytic Leukemia