Treatment FAQ

when do you start treatment for cll

by Leora Gottlieb MD Published 3 years ago Updated 2 years ago
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Patients with chronic lymphocytic leukemia (chronic lymphoid leukemia, CLL) do not need drug therapy until they become symptomatic or display evidence of rapid progression of disease, as characterized by the following: Weight loss of more than 10% over 6 months.Feb 8, 2022

At what point do you start treatment for CLL?

Doctors usually wait until there are signs the CLL is progressing before suggesting you have treatment. There is no evidence that starting treatment before this helps, and it can cause side effects. CLL usually develops very slowly, so you may not need treatment for months or years.

What percentage of CLL patients need treatment?

Around 30-50% of people diagnosed with CLL never require any treatment for their disease and can survive for many years despite their diagnosis.

How do I know if my CLL is getting worse?

Unexplained weight loss of more than 10 percent of your body weight over the course of 6 months or so could mean your CLL is progressing. This means that you're losing weight when you're not trying to diet.

Do you need treatment for CLL?

Chemotherapy is the main treatment if it's more advanced. Treatment can often help keep CLL under control for many years. It may go away after treatment initially (known as remission), but will usually come back (relapse) a few months or years later and may need to be treated again.

Can I live 30 years with CLL?

Chronic lymphocytic leukemia (CLL) can rarely be cured. Still, most people live with the disease for many years. Some people with CLL can live for years without treatment, but over time, most will need to be treated.

Can CLL go into remission without treatment?

While there is not yet a cure for the condition, a wide range of effective treatments are available. And some people don't need any treatment if the CLL is slow-growing or in a period of remission.

What is the newest treatment for CLL?

In May 2019, the FDA approved venetoclax (Venclexta) in combination with obinutuzumab (Gazyva) to treat people with previously untreated CLL as a chemotherapy-free option. In April 2020, the FDA approved a combination therapy of rituximab (Rituxan) and ibrutinib (Imbruvica) for adult patients with chronic CLL.

What should be avoided in CLL?

Your CLL treatment may weaken your immune system and raise your chances of getting foodborne illness. These steps can help keep you safe: Cook meat until it's well-done and eggs until the yolks are hard. Avoid raw sprouts, salad bars, and unpasteurized drinks and cheeses.

What does CLL fatigue feel like?

In general, the fatigue associated with CLL tends to: make it difficult or impossible to do what you used to do in a day. make you feel weak and completely out of energy. not go away even if you are getting enough sleep.

When does leukemia treatment start?

This is the first round of treatment given during the first 3 to 4 weeks after diagnosis. It is designed to destroy most of the leukemia cells, stop symptoms of the disease, and return the blood counts to normal levels.

What happens if I don't treat CLL?

Both treated and untreated people with CLL can develop acute myeloid leukemia or myelodysplastic syndromes. These complications are more common after treatment with fludarabine and cyclophosphamide (FC) or fludarabine, cyclophosphamide and rituximab (FCR).

Does Stage 0 CLL always progress?

Stage 0. The number of red blood cells and platelets are almost normal. Your lymph nodes, spleen, and liver are fine. You're at low risk and probably don't need treatment now.

What happens when you have chronic lymphocytic leukemia?

Chronic lymphocytic leukemia occurs when your body produces abnormal lymphocytes, a type of white blood cell. These abnormal lymphocytes don’t function as white blood cells should to help your immune system. They also multiply faster and live longer. Over time, they can “crowd out” other healthy blood cells in your bone marrow, such as your red blood cells and platelets. The cancerous cells may travel through your blood to other organs, affect ing them as well.

What is the treatment for high white blood cells?

Another type of treatment, such as targeted therapy or chemotherapy, will still be needed afterwards.

Is CLL better tolerated?

The new stem cells then create new and healthy blood cells. Getting any kind of cancer diagnosis can be scary, but new treatments for CLL are often more effective and better tolerated than those of the past. With the addition of these novel therapies to the CLL treatment arsenal, the outlook looks brighter than ever.

Does leukemia improve life expectancy?

Several studies have shown treating chronic lymphocytic leukemia early in the disease process doesn’t improve your overall outcome or increase your life expectancy. And since most people don’t experience any symptoms in these early stages, there’s less of a benefit and more of a risk of side effects or complications from cancer treatment.

Where does CLL spread?

In chronic lymphocytic leukemia ( CLL ), the leukemia cells may spread from the blood and bone marrow to other parts of the body, such as the lymph nodes, liver, and spleen. It is important to know whether the leukemia cells have spread in order to plan the best treatment.

What is stage 0 leukemia?

Stage 0. In stage 0 chronic lymphocytic leukemia, there are too many lymphocytes in the blood, but there are no other signs or symptoms of leukemia . Stage 0 chronic lymphocytic leukemia is indolent (slow-growing).

What is BCL2 inhibitor therapy?

BCL2 inhibitor therapy: This treatment blocks a protein called BCL2 which is found on some leukemia cells. This may kill leukemia cells and make them more sensitive to other anticancer drugs. Venetoclax is a type of BCL2 therapy used to treat symptomatic or progressive, recurrent, or refractory CLL.

Why do we do clinical trials?

Clinical trials are done to find out if new cancer treatments are safe and effective or better than the standard treatment.

Can lymphocytic leukemia cause tiredness?

Signs and symptoms of chronic lymphocytic leukemia include swollen lymph nodes and feeling tired. In the beginning, CLL does not cause any signs or symptoms and may be found during a routine blood test. Later, signs and symptoms may occur.

Can you take part in a clinical trial for chronic lymphocytic leukemia?

Treatment for chronic lymphocytic leukemia may cause side effects. Patients may want to think about taking part in a clinical trial. Patients can enter clinical trials before, during, or after starting their cancer treatment. Follow-up tests may be needed.

Can leukemia cause infection?

These leukemia cells are not able to fight infection very well. Also, as the number of leukemia cells increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may lead to infection, anemia, and easy bleeding. This summary is about chronic lymphocytic leukemia.

What Is CLL?

Chronic lymphocytic leukemia (CLL) is a cancer that affects a type of white blood cell called lymphocytes. When you have it, some blood stem cells in your body don't grow properly and the resulting lymphocytes can't fight infection very well.

How CLL Spreads

This type of leukemia starts in bone marrow -- the spongy tissue inside bones where blood cells are made. From there, it moves into your blood. Over time, the cancer cells can spread to other parts of your body like the liver, spleen, and lymph nodes.

How Serious Is It?

The Rai staging system is usually what doctors in the U.S. use. It describes CLL based on the results of blood tests and a physical exam when you're diagnosed. Everyone with CLL will have more lymphocytes in their bone marrow and blood than there should be, for no good reason. And a large number of them will have come from the same cell.

Stage 0

The number of red blood cells and platelets are almost normal. Your lymph nodes, spleen, and liver are fine. You're at low risk and probably don't need treatment now.

Stage I

This stage is intermediate risk. The difference is that your lymph nodes are enlarged. These are part of your immune system. They help fight infections as well as filtering out dead and damaged cells, and they swell when they're working hard.

Stage II

Your spleen or liver is larger than normal. Your lymph nodes might be swollen, too, but not necessarily. This is also an intermediate risk stage, and you'll start treatment if your doctor thinks your symptoms or lymphocyte count are serious.

Stage III

The number of other blood cells are affected. At stage III, you don't have enough red blood cells (a condition called anemia), although your platelet count is near normal. Your lymph nodes, spleen, or liver might be enlarged, but they don't have to be. This is an advanced, high-risk stage, and you'll need treatment.

How treatment works

Cancer cells have changes in their genes (DNA) that make them different from normal cells. These changes mean that they behave differently. Cancer cells can grow faster than normal cells and sometimes spread. Targeted cancer drugs work by ‘targeting’ those differences that a cancer cell has.

What treatment will I have?

Your doctor considers several factors when deciding about treatment, including:

How you have treatment

You have treatment in cycles or blocks. Each cycle usually lasts for 28 days. After each cycle of treatment, your team will check your side effects. They will also check how well treatment is working.

Other treatment

You might have other treatments to treat symptoms of CLL, or to prevent problems caused by the leukaemia.

Follow up and monitoring

How often you see your specialist depends on your situation. You need to see your doctor regularly, maybe weekly or monthly, if you are having treatment.

Treatment when CLL comes back

When CLL comes back, it is called a relapse. The treatment you need depends on your individual situation.

Coping with CLL

Coping with a diagnosis of CLL can be difficult. There is lots of support available inlcuding specialist nurses. It is important to get the support you need.

Symptoms Indicate Need to Start Treatment

Generally, chronic lymphocytic leukemia is not treated until symptoms appear. Symptoms may include:

Ask Questions and Get a Second Opinion

No one ever wants to hear the words, “You have cancer.” But once you’ve received a diagnosis, it’s critical to be your own best advocate.

What is the symptom of CLL and SLL?

One symptom of CLL and SLL is swollen lymph nodes; the location of the swelling could play a role in whether or not the disease is treated. “It’s about location … a big node may not be causing any problems, but a smaller node pushing on an organ may cause some problems.

When was Venclexta approved?

Since then, there have been three more approvals in the space: Venclexta (venetoclax), which was approved in 2016 ; Copiktra (duvelisib), which was approved in 2018; and Calquence (acalabrutinib), which was approved in 2019.

Does CLL need immediate treatment?

Treatments for chronic lymphocytic leukemia (CLL) and small lymphocytic leukemia (SLL) have drastically improved in recent years, although patients may not need immediate treatment directly after being diagnosed.

What is the best treatment for CLL?

One of the most promising future treatment options for CLL is CAR T-cell therapy. CAR T, which stands for chimeric antigen receptor T-cell therapy, uses a person’s own immune system cells to fight cancer.

How many clinical trials are there for CLL?

These new treatments may work better for you than the ones currently available. There are currently hundreds of clinical trials ongoing for CLL.

Why are targeted therapies called targeted therapies?

These drugs are called targeted therapies because they’re directed at specific proteins that help CLL cells grow. Examples of targeted drugs for CLL include:

What is CLL in medical terms?

Chronic lymphocytic leukemia (CLL) is a slow-growing cancer of the immune system. Because it’s slow-growing, many people with CLL won’t need to start treatment for many years after their diagnosis.

What does it mean when you have a high risk CLL?

High-risk CLL describes patients with stage 3 or stage 4 cancer. This means you may have an enlarged spleen, liver, or lymph nodes. Low red blood cell counts are also common. In the highest stage, platelet counts will be low as well.

What is intermediate risk CLL?

Intermediate-risk CLL describes people with stage 1 to stage 2 CLL, according to the Rai system. People with stage 1 or 2 CLL have enlarged lymph nodes and potentially an enlarged spleen and liver, but close to normal red blood cell and platelet counts. High-risk CLL describes patients with stage 3 or stage 4 cancer.

What is low risk CLL?

Treatments for low-risk CLL. Doctors typically stage CLL using a system called the Rai system. Low-risk CLL describes people who fall in “stage 0” under the Rai system. In stage 0, the lymph nodes, spleen, and liver aren’t enlarged. Red blood cell and platelet counts are also near normal. If you have low-risk CLL, ...

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