Treatment FAQ

what to do after cll treatment and prevention

by Dora Lowe Published 2 years ago Updated 2 years ago
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Ask your doctor for a survivorship care plan
  1. A suggested schedule for follow-up exams and tests.
  2. A schedule for other tests you might need in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment.
May 10, 2018

Medication

There are very few known risk factors for chronic lymphocytic leukemia (CLL), and most of these cannot be avoided. Most people with CLL have no known risk factors, and there's no way to prevent these cancers.

Procedures

Treatment of CLL is not expected to cure the disease. This means that even if there are no signs of leukemia after treatment (known as a complete remission), the leukemia is likely to come back (recur) at some point.

Therapy

People who’ve had CLL can still get other cancers. In fact, CLL cancer cancer survivors are at higher risk for getting some other types of cancer. Learn more in Second Cancers After Chronic Lymphocytic Leukemia .

Nutrition

Most people with CLL are treated on and off for years. Treatment may stop for a while, but it never really ends. Life after cancer means returning to some familiar things and also making some new choices.

Can chronic lymphocytic leukemia (CLL) be prevented?

Can CLL be cured completely?

Can you get other cancers after CLL?

What is life like after CLL?

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Does CLL always come back?

In some types of cancer, remission may turn into a lasting cure. But when you have chronic lymphocytic leukemia (CLL), your symptoms are likely to eventually come back. Still, remissions in CLL can last a long time. And when your cancer returns, you can choose to have more treatment.

How many times can you have treatment for CLL?

Chemotherapy for more advanced CLL Many people with CLL will need to have chemotherapy medicines under control. There are a number of different medicines for CLL, but most people take 3 in treatment cycles lasting 28 days.

How often does CLL come back?

However, even after this treatment regimen, approximately 6% of patients will relapse within six to 12 months and another 14% will do so within two years.

How do you know if CLL is in remission?

CLL is considered to be in complete remission (CR) if your blood tests no longer show the presence of CLL and you don't have symptoms such as swelling in your lymph nodes or spleen. CLL is considered to be in partial remission (PR) if you're symptom-free, but some amount of CLL remains in your blood.

Can CLL be cured completely?

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.

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 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.

Can you live 20 years with leukemia?

People in stages 0 to II may live for 5 to 20 years without treatment. CLL has a very high incidence rate in people older than 60 years. CLL affects men more than women. If the disease has affected the B cells, the person's life expectancy can range from 10 to 20 years.

Can CLL lead to other cancers?

People with CLL can get any type of second cancer, but they have an increased risk of: Skin cancer. Melanoma of the skin. Cancer of the larynx.

Can you live 50 years with CLL?

People can live with CLL for many years after diagnosis, and some can live for years without the need for treatment.

How many CLL patients relapse?

However, after treatment with FCR, approximately 6% of patients relapse within 6 to 12 months and a further 14% do so within 2 years. Treatment of relapsed CLL often hinges on providing therapy that maximizes survival and disease control while minimizing toxicity with the overall goal of improving quality of life.

Is CLL high risk for Covid?

At this time, there is no evidence indicating a disproportionately higher incidence of severe COVID-19 in patients with CLL compared to patients with other malignancies. However, two large multicenter studies have shown a high mortality rate in patients with CLL and severe COVID-19 in the range of ~ 30%.

Can I Lower My Risk of Cll Progressing Or Coming back?

If you have CLL, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as...

Could I Get A Second Cancer After Treatment?

People who’ve had CLL can still get other cancers. In fact, CLL cancer cancer survivors are at higher risk for getting some other types of cancer....

Getting Emotional Support

Some amount of feeling depressed, anxious, or worried is normal when cancer is a part of your life. Some people are affected more than others. But...

How long does CLL last?

Some may last for a few weeks to months, but others can last the rest of your life. This is the time for you to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have. Treatment of CLL is not expected to cure the disease.

How long does cancer treatment last?

Almost any cancer treatment can have side effects. Some may last for a few weeks to months, but others can last the rest of your life.

Can dietary supplements help with CLL?

About dietary supplements. So far, no dietary supplements (including vitamins, minerals, and herbal products) have been shown to clearly help lower the risk of CLL progressing or coming back. This doesn’t mean that no supplements will help, but it’s important to know that none have been proven to do so.

Does CLL come back after treatment?

Treatment of CLL is not expected to cure the disease. This means that even if there are no signs of leukemia after treatment (known as a complete remission), the leukemia is likely to come back (recur) at some point.

Does CLL go away?

Most people with CLL are treated on and off for years. Treatment may stop for a while, but it never really ends. Life after cancer means returning to some familiar things and also making some new choices. Learning to live with cancer that does not go away can be difficult and very stressful.

Can you live with lymphocytic leukemia?

Living as a Chronic Lymphocytic Leukemia Survivor. 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 be treated with chemotherapy?

Most people with CLL do not have normally functioning immune systems, which may raise their risk for certain infections. Some of the drugs used to treat CLL, such as alemtuzumab (Campath) and many chemotherapy drugs, may also raise this risk. Your doctor may recommend vaccines, certain medicines, or other treatments to help prevent ...

Risk Factors

A risk factor is anything that affects your chance of getting a disease such as cancer. Learn more about the risk factors for chronic lymphocytic leukemia.

Prevention

There are very few known risk factors for chronic lymphocytic leukemia (CLL), and most of these cannot be avoided. Most people with CLL have no known risk factors, and there's no way to prevent these cancers.

What is the best treatment for CLL?

Steroids. Corticosteroids (“steroids”) curb inflammation and are used to treat many conditions. They may also be part of your CLL treatment and to help control side effects from chemo. Your doctor may prescribe one, such as prednisone, as part of your CLL treatment.

How long does it take for chemo to go away?

You can also get infections more easily. You can take medicine to help with some of these problems. Most of these side effects peak 3-5 days after you get chemo and go away after your treatment ends, though some last longer.

What is palliative care?

Palliative care aims to ease pain, stress, anxiety, depression, fatigue, and other stresses that may come with having cancer. What You Can Do. Cancer treatment is challenging.

How long does it take for tumor lysis to start?

Tumor lysis syndrome needs to be treated right away. Symptoms usually start 2 to 3 days after treatment. Call your doctor right away if you have severe vomiting and diarrhea, trouble peeing, feel dizzy, or have seizures. Kinase inhibitors target certain proteins in and on cancer cells that help them grow and spread.

What are the two types of drugs that stop cancer cells from growing?

Targeted Therapies. These are drugs that stop cancer cells from growing. They include two types of drugs: monoclonal antibodies and kinase inhibitors. Monoclonal antibodies (MABs) mimic or boost the action of your own immune system. They attach to your cancer cells so your immune system can destroy them.

Does curcumin kill CLL?

Since there’s no cure for CLL, so some people look to natural treatments. EGCG from green tea and curcumin from the herb turmeric show promise. In early lab tests, they kill CLL cells but don’t harm healthy ones. But it’s too soon to know if that’s true in people or what the right dose is.

Chronic Lymphocytic Leukemia Survival Rate

The survival rate for CLL is better than for many other types of cancer. Data compiled by the National Cancer Institute (NCI) from 2011 to 2017 indicate that the five-year relative survival rate for CLL is 87.2%. 4 NCI data for that same time frame show a decline in the new case rate and death rate for CLL.

Factors That Influence Outlook

No two people are alike. Your CLL prognosis will vary from that of other people with this condition. Age, overall health, and response to treatment can all have an impact on your outlook and what you can expect.

Is a Cure for CLL in Sight?

There is currently no cure on the horizon for CLL. Research is ongoing and continues to prolong survival and improve the quality of life for people with this condition.

Coping and Support for Chronic Lymphocytic Leukemia

Receiving a diagnosis of CLL can be scary and upsetting. People with early-stage disease who are watching and waiting may find it stressful to not pursue treatment. 17

Summary

CLL is a slow-growing cancer. It is possible to have this condition for many years before you start to show symptoms. The prognosis for CLL is much higher than for many other types of cancer. However, there is currently no cure for this disease. CLL has a five-year survival rate of around 83%, although it drops under 70% in those over 75.

A Word From Verywell

Finding out that you or a loved one has CLL may take your breath away. It can be overwhelming to learn you have an incurable condition. It may sound cliché, but incurable and untreatable are not the same thing.

What is the first treatment for CLL?

Initial treatment of CLL. Many different drugs and drug combinations can be used as the first treatment for CLL. The options include monoclonal antibodies, other targeted drugs, chemotherapy, and different combinations of these. Some of the more commonly used drug treatments include: Other drugs or combinations of drugs may also be used.

What happens if the first line of treatment is not working?

If the initial treatment is no longer working or the disease comes back, another type of treatment often helps . If the initial response to the treatment lasted a long time (usually at least a few years), the same treatment might be used again. If the initial response wasn't long-lasting, using the same treatment isn't as likely to be helpful. The options will depend on what the first-line treatment was and how well it worked, as well as the person's overall health.

What is the most serious type of CLL?

One of the most serious complications of CLL is a change (transformation) of the leukemia to a high-grade or aggressive type of non-Hodgkin lymphoma (NHL) called diffuse large B-cell lymphoma (DLBCL) or to Hodgkin lymphoma. 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 ...

How long does it take for chemo to lower blood count?

Chemo may not lower the number of cells until a few days after the first dose, so before the chemo is given, some of the cells may need to be removed from the blood with a procedure called leukapheresis. This treatment lowers blood counts right away.

What is the rarest complication of CLL?

If this happens, treatment is likely to be similar to that used for patients with ALL. Acute myeloid leukemia (AML) is another rare complication in patients who have been treated for CLL.

What is the best treatment for enlarged spleen?

Radiation or surgery. If the only problem is an enlarged spleen or swollen lymph nodes in one part of the body, localized treatment with low-dose radiation therapy may be used. Splenectomy (surgery to remove the spleen) is another option if the enlarged spleen is causing symptoms.

Does leukemia treatment work before chemo?

This treatment lowers blood counts right away. The effect lasts only for a short time, but it may help until the chemo has a chance to work. Leukapheresis is also sometimes used before chemo if there are very high numbers of leukemia cells (even when they aren’t causing problems) to prevent tumor lysis syndrome.

What is the WBC of a CLL patient?

Nine months after diagnosis, a fellow patient with CLL tells you that his WBC (white blood cell count) is 49,000 with an ALC (absolute lymphocyte count) of 42,000. He has clusters of 2 x 1 cm nodes in both axillae (armpits). Labs are otherwise OK. He feels well, just a bit tired and stressed. He asks what symptoms or lab results might indicate it is time to treat. You tell him:

What is CLL in hematology?

Hematology in general and CLL specifically are full of jargon and acronyms that can be both overwhelming and daunting . With time and experience, you’ll become familiar with the terminology and acronyms. We will try to explain each medical term the first time it appears in an article, but we will use the true terminology so that you gain comfort and familiarity with the medical terms that you will see in your lab reports and in medical articles. We have also provided a glossary and a list of abbreviations and acronyms for your reference.

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