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What is expert access for CLL?

Access to a CLL expert is critical to ensure receiving the best possible care and has proven to improve survival. In partnership with Verastem Oncology (Expert Access Founding Supporter), Genentech, and InfiniteMD, the CLL Society is proud to offer this free second opinion program for CLL patients.

How do you know if you have CLL?

This can help streamline your diagnosis. To diagnose CLL, your doctor will conduct a physical exam to look for lymph node swelling and abdominal pain. They’ll also take a medical history that includes information about your family’s history of this disease.

Where can I find the NCCN guidelines for patients?

The NCCN Guidelines for Patients sheets are available to read and download for free online and via the NCCN Patient Guides for Cancer mobile app. Printed editions can be ordered from Amazon.com for a small fee. NCCN Guidelines for Patients DO NOT replace the expertise and clinical judgment of the clinician.

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%.

Is CLL a serious condition?

The prognosis of patients with CLL varies widely at diagnosis. Some patients die rapidly, within 2-3 years of diagnosis, because of complications from CLL. Most patients live 5-10 years, with an initial course that is relatively benign but followed by a terminal, progressive, and resistant phase lasting 1-2 years.

What kind of cancer is CLL?

Chronic lymphocytic leukemia is a type of cancer in which the bone marrow makes too many lymphocytes (a type of white blood cell). Chronic lymphocytic leukemia (also called CLL) is a cancer of the blood and bone marrow that usually gets worse slowly. CLL is one of the most common types of leukemia in adults.

Is CLL a leukemia or lymphoma?

Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults. It's a type of cancer that starts in cells that become certain white blood cells (called lymphocytes) in the bone marrow. The cancer (leukemia) cells start in the bone marrow but then go into the blood.

Can you live 20 years with CLL?

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.

Is CLL a death sentence?

Is CLL a death sentence? CLL is not curable. However, it is possible to live for 10 years or more after diagnosis.

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.

What are the final stages of CLL?

When the disease moves into the later stages, CLL cells crowd out the healthy cells in the bone marrow, which could lead to problems such as anemia, low platelets, and an enlarged liver and spleen.

Can CLL cause dementia?

2 patients with early-stage chronic lymphocytic leukaemia had involvement of the central nervous system causing dementia as the predominant clinical symptom.

Why does CLL start in bone marrow?

In chronic lymphocytic leukaemia (CLL), the spongy material found inside some bones (bone marrow) produces too many white blood cells called lymphocytes, which are not fully developed and do not work properly.

Can CLL spread to bones?

Bone metastasis in CLL/SLL is very rare, generally osteolytic, and affects less than 5% of CLL patients [6–9].

How long does CLL last?

CLL tends to be a slowly progressing disease which can last for years. Many people with CLL die of other unrelated conditions which affect older people. The treatment of cancer and leukaemia is a developing area of medicine. New treatments continue to be developed and the information on outlook above is very general.

How common is CLL in the UK?

CLL is the most common type of leukaemia. It occurs in around 2,750 people each year in the UK. Most cases occur in people over the age of 60 years. It is rare under the age of 40 years. It is more common in males. In about 1 in 10 cases it runs in families (is familial).

Why are my lymphocytes abnormal?

The main reason for the build-up of the abnormal lymphocytes is because they live too long - they do not die after the usual lifespan of a lymphocyte.

How long does it take for a large number of white blood cells to build up in the bloodstream?

Over months or years, a large number of abnormal lymphocyte white blood cells may gradually build up in the bloodstream without causing any problems. In time, the abnormal lymphocytes may fill much of the bone marrow.

Where do abnormal lymphocytes build up?

The abnormal lymphocytes may also build up in lymph glands and in the spleen. With CLL it is also common to develop swollen glands in various parts of the body, particularly in the neck and armpits, and develop an enlarged spleen.

Do people with stage A CLL need treatment?

Many people with stage A CLL do not need any treatment. This is because many people with stage A disease do not have any symptoms, and it often causes little harm. In many cases of stage A disease, the disease progresses slowly and never needs treatment. For people in stage A CLL, the risks of treatment often outweigh the benefits of treatment. Treatment may be started if symptoms develop, or when blood tests show that the disease is progressing more rapidly. Your specialist will advise on the pros and cons of treatment and on when it should be started.

Can CLL be diagnosed by chance?

At first, in many cases, there are no symptoms. The condition is often first diagnosed by chance when a blood test is taken for another reason. Nearly half of people with CLL have no symptoms when they are diagnosed with this condition.

Where does leukemia start?

Leukemia begins in the blood and bone marrow (the soft, spongy center of some bones). It occurs when the bone marrow makes too many white blood cells. These white blood cells don’t fight infection like healthy white blood cells do, which makes an individual susceptible to repeated infections.

What is the most common type of leukemia?

Chronic lymphocytic leukemia (CLL), a usually slow-growing type of hematologic (blood) cancer, is the most common type of leukemia diagnosed in adults. It is characterized mainly by its type and subtype. Your doctor will design a personalized treatment plan based on your type, subtype and other unique characteristics, which is why you may want to consider finding a hematologist who specializes in CLL.

About the Disease

Chronic lymphocytic leukemia (CLL) is a cancer of the blood and bone marrow with an increased number of white blood cells. CLL affects the circulatory system. Subtypes include b-cell CLL, t-cell prolymphocytic leukemia and small lymphocytic lymphoma (SLL).

Patients can receive free education and support services

The Aplastic Anemia & MDS International Foundation provides education and support to patients and families living with aplastic anemia, myelodysplastic syndrome, paroxysmal nocturnal hemoglobinuria, and related bone marrow failure diseases.

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.