Treatment FAQ

when to begin cll treatment

by Danielle Kerluke Published 2 years ago Updated 1 year ago
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It may be time to start CLL treatment if you develop the following:

  • Swollen lymph nodes
  • Enlarged spleen or liver
  • Decreased red blood cells or platelets on blood work
  • Rapidly increasing lymphocytes on blood work
  • Symptoms like fever, infection, fatigue, chills, night sweats, or weight loss

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.

Full Answer

What is the life expectancy for chronic lymphocytic leukemia?

What is the outlook for chronic lymphocytic leukemia?

  • CLL overview. CLL does not usually present symptoms, and older adults are more likely to be affected by it. ...
  • Survival rates. Survival rates can give a person more information about the outlook for their illness and help them to plan treatment and care.
  • Factors that influence life expectancy. ...
  • Living with CLL. ...
  • Takeaway. ...

How to cure CLL?

Until then, try to:

  • Find out enough about your cancer to make decisions about your care. ...
  • Turn to family and friends for support. Stay connected to family and friends for support. ...
  • Connect with other cancer survivors. Consider joining a support group, either in your community or on the internet. ...
  • Explore ways to cope with the nagging, chronic nature of the disease. ...

When is the best time to start treatment?

Well, the year is really flying by, isn’t it! Here we are looking at the best games for this Novem…wait, hang on… (checks notes)… oh god, oh no. Right, here we are looking at the best Switch games for this December, of course. Can you believe it’s 2022 next month? I might need to curl up and think about my life for a quick spell soon.

When should you stop cancer treatment?

  • Do I want to continue treating the cancer no matter what, even if the benefits are small and the side effects become hard to manage? ...
  • If the side effects of treatment start to outweigh the benefits, would I consider stopping treatment? ...
  • How will I know when the time is right to even think about stopping? ...

More items...

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What is considered a high WBC for CLL?

At the time of diagnosis, patients can have very, very high white blood cell counts. Typically a healthy person has a white blood cell count of about 4,000-11,000. Patients with acute or even chronic leukemia may come in with a white blood cell count up into the 100,000-400,000 range.

What percentage of CLL patients need treatment?

This happens in 2% to 10% of CLL cases, and is known as Richter's transformation. Treatment is often the same as it would be for lymphoma and might include stem cell transplant, because these cases are often hard to treat. Less often, CLL may progress to prolymphocytic leukemia.

Does CLL always require treatment?

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. Most people with CLL are treated on and off for years.

Does early stage CLL always progress?

Every case of CLL is different, and it can be difficult to predict if and when your CLL will progress. Some people experience fast progression, while others go on for years without experiencing any new symptoms. People who are diagnosed at a higher stage of CLL are likely to progress at a faster rate.

At what stage is CLL treated?

The disease is monitored regularly, and treatment is started when CLL progresses to the intermediate and advanced stages.

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 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).

What is the first line of treatment for CLL?

Chemoimmunotherapy (CIT) has been the standard first-line therapy for CLL. Age and comorbidities can help decide which patients may benefit from a CIT approach. FCR (fludarabine, cyclophosphamide, and rituximab) is the current standard treatment option for younger patients with CLL.

How long can you live with CLL without treatment?

People with CLL at a lower stage (with less disease) generally have a better prognosis than those with more advanced CLL. Most people live for about 10 years, but this varies depending on how CLL behaves. People in stages 0 to II may live for 5 to 20 years without treatment.

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 is low grade CLL?

CLL and SLL are slow-growing (low-grade or 'indolent') cancers. Many doctors group them together as a type of non-Hodgkin lymphoma. They usually behave like a long-term (chronic) condition that needs treatment from time-to-time to keep it under control.

What happens when CLL turns into lymphoma?

This is when the CLL changes (transforms) into a rare type of non-Hodgkin lymphoma, usually diffuse large B cell lymphoma. Sometimes it can transform into Hodgkin lymphoma or other types of non-Hodgkin lymphoma, although this is rare. This type of cancer grows quickly, and people might become unwell quite suddenly.

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 treatment for CLL?

Targeted therapy: Targeted drugs have been developed to recognize certain features of cancer cells and stop them from growing or spreading. They are often used as a first-line treatment for CLL. Ibrutinib (Imbruvica), and venetoclax (Venclexta) are common examples.

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.

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.

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.

Is CLL a slow growing cancer?

Chronic lymphocytic leukemia, or CLL, is a slow-growing form of cancer. In contrast to more aggressive cancers, many cases of CLL do not require immediate treatment, and some people won’t need treatment for many years after diagnosis.

Who treats CLL?

Based on your treatment options, you might have different types of doctors on your treatment team. These doctors could include:

Why is it important to take time to think about CLL?

Common treatment approaches. It's important to take time and think about your choices. Because CLL often grows slowly, not everyone needs to be treated right away. In choosing a treatment plan, the stage of the leukemia and other prognostic factors are important.

What to do if you have chronic lymphocytic leukemia?

It’s important that you think carefully about each of your choices. Weigh the benefits of each treatment option against the possible risks and side effects.

Why do we do clinical trials?

Clinical trials are carefully controlled research studies that are done to get a closer look at promising new treatments or procedures . Clinical trials are one way to get state-of-the art cancer treatment. In some cases they may be the only way to get access to newer treatments. They are also the best way for doctors to learn better methods to treat cancer. Still, they're not right for everyone.

Why is it important to discuss treatment options with your doctor?

Making treatment decisions. It’s important to discuss all of your treatment options, including their goals and possible side effects, with your doctors to help make the decision that best fits your needs. It’s also very important to ask questions if there's anything you’re not sure about.

What do people with cancer need?

People with cancer need support and information, no matter what stage of illness they may be in. Knowing all of your options and finding the resources you need will help you make informed decisions about your care.

What is the number to call for cancer treatment?

Call our National Cancer Information Center at 1-800-227-2345 and speak with one of our trained specialists. Palliative Care. Find Support Programs and Services in Your Area.

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.

Can you get one class of drugs for initial treatment?

Patients may get one class of drugs for initial treatment, and then switch to another type of agent, or may get a combination, depending on factors like disease pathways and side effects.

Is there more drug choice for CLL patients than ever before?

For patients being treated for CLL/SLL there are now more drug choices than ever before.

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.

What doctor will see if you have CLL?

If you have low-risk CLL, your doctor (usually a hematologist or oncologist) will likely advise you to “wait and watch” for symptoms. This approach is also called active surveillance.

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, ...

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.

What is the mantra for CLL?

The " watch and wait " mantra in CLL can be a test of wills unlike most other cancer experiences. Let's face it, sitting there and doing, "nothing" is hard enough when we are conditioned to believe "early detection saves lives" or "catching it early is your best chance to beat it.". Those things are true in common cancers like breast, prostate, ...

How long does it take for a white blood count to go from 20 to 50?

It is one thing for a white blood count to go from 20 -30 - 50 - 80 over a two year period. It is another thing all together if that happens over four months. All too often, I hear people get anxious when the wbc goes from 30 to 50 without other changes.

Is rituxan good for follicular lymphoma?

In follicular lymphoma, things are changing for the better. Rituxan is "biologic therapy" that is a pretty effective treatment that does not necessarily need to involve chemotherapy. 70% of patients will respond to rituxan and disease control can be quite durable for some patients.

Is 100 CLL different from 100 AML cells?

In some of the "acute leukemias" which are very different conditions - such numbers would be terrifying. The biology is very different though - 100 CLL cells is very different than 100 AML cells. So if we don't look at a single number - then what should we look at.

Does fludarabine help CLL?

Things have started to change though. Two studies in the past few years have shown we can improve overall survival in CLL (both started quite some time ago). Frontline fludarabine keeps patients alive longer than frontline chlorambucil in patients needing treatment and the Germans have shown us that FCR keeps patients alive longer than FC.

What type of CLL treatment is best for me?

We have more options than ever for treating CLL. Your doctor will consider the stage of your cancer, its genetic characteristics, your age, and your overall health when selecting which treatments will be most effective.

What is the best treatment for CLL leukemia?

Chemotherapy: Until recently, this was the primary method of treating CLL leukemia, but treatment advances including targeted therapies and immunotherapies have given us more options with fewer side effects. Chemotherapy attacks rapidly growing cells in your body, like cancer cells.

What are the side effects of CLL?

Potential side effects include fever, chills, anemia, infection, stomach upset, fatigue, and others. Stem cell transplant: If your CLL is considered high-risk, you may be a candidate for this procedure.

How does chemotherapy kill cancer cells?

Chemotherapy is first used to kill your cancer cells, as well as the stem cells in your bone marrow that are producing the abnormal lymphocytes. Then, new stem marrow cells from a donor are transplanted into your system. These cells take over the process of creating new healthy blood cells for your body.

What are the symptoms of CLL?

It may be time to start CLL treatment if you develop the following: Swollen lymph nodes. Enlarged spleen or liver. Decreased red blood cells or platelets on blood work. Rapidly increasing lymphocytes on blood work. Symptoms like fever, infection, fatigue, chills, night sweats, or weight loss.

How does CLL affect the body?

As the abnormal cancer cells increase in number, they can build up in your blood, lymph nodes, liver, and spleen. CLL may eventually impact your body’s ability to make healthy blood cells, including white blood cells, red blood cells, and platelets. Your doctor will look at several things to decide if you’re ready for treatment.

Does chemotherapy damage hair follicles?

Chemotherapy attacks rapidly growing cells in your body, like cancer cells. But it can also damage fast-growing healthy cells, like those in your hair follicles and intestines, and lead to unpleasant side effects. Fludarabine (Fludara) and cyclophosphamide (Cytoxan) are two examples.

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